Alzheimer S Dementia Caregiver Resource Guide

Alzheimers and Dementia Caregiver Resource Guide
UNC Institute on Aging

The University of North Carolina at Chapel Hill December 2009
ABOUT THE CENTER

Mission & Research
The Center for Aging and Diversity is a part of the UNC Institute on Aging. Its mission is to address, through research and training, health disparities in later life; provide a forum in which to discuss and examine ethnic, racial, and cultural variation in life course processes; and to disseminate research findings to the academic and lay community on the health of older diverse populations. The Center for Aging and Diversity conducts research studies relevant to older minority populations, particularly in the area of health disparities.
Research at the Center is concentrated in four areas:

Dementia caregiving in diverse populations Family caregiving Social support and family health outcomes Health disparities
Staff
Peggye Dilworth-Anderson, PhD, Director Gracie Boswell, PhD, Research Scientist Sharon Williams, PhD, Research Scientist Monique Cohen, MPH, Research Assistant Elise Lockamy, Research Assistant Geraldine Pierre, Research Assistant JoAnn Whetsell, Research Assistant
Contact Information
UNC Institute on Aging Center for Aging and Diversity University of North Carolina at Chapel Hill 720 Martin Luther King Jr. Blvd., Suite 100 Chapel Hill, NC 27599 (919) 966-9444 Toll Free: (866) 725-3583 FAX: (919) 966-2266
http://www.aging.unc.edu/cad
Acknowledgments
This Caregiver Resource Guide was developed with research study grant funds from GlaxoSmithKline Community Partnership Program of North Carolina.
THISPAGEINTENTIONALLYLEFTBLANK
THANK YOU FOR YOUR SUPPORT

We have created this Caregiver Resource Guide for you and your family to use in your role as caregiver to an older person with dementia. Your participation in our research has been very helpful in developing plans to help people care for older adults, creating services to support caregivers, and serving the needs of caregivers and older adults. In appreciation of your openness and willingness to share your thoughts, we are providing you with this resource guide, which will help you to provide the best care possible to an older person with dementia. Feel free to share this guide with others if you are no longer a caregiver. Also, feel free to share our contact information with other caregivers seeking information.
Contact Information UNC Institute on Aging Center for Aging and Diversity University of North Carolina at Chapel Hill 720 Martin Luther King Jr. Blvd., Suite 100 Chapel Hill, NC 27599 (919) 966-9444 Toll Free: (866) 725-3583 FAX: (919) 966-2266 http://www.aging.unc.edu/cad
Table of Contents
1. Important Facts 1
What Is Alzheimers Disease.. 3 Alzheimers Disease and Other Dementias.. 5 10 Warning Signs of Alzheimers................... 9 Statistics on Alzheimers Disease and Related Dementias - 2009........... 13 2. Diagnosis 17
Alzheimers Disease: Diagnosis. 19 Telling Others About an Alzheimer Diagnosis. 21 3. Stages and Progression 25
Stages of Alzheimers Disease... 27 4. Medications 33
Alzheimers Disease Medications.. 35 Taking Medication Safely. 39 5. Safety 43
Safety. 45 Safety Checklist 49 Driving 51 Wandering Behavior: Preparing for and Preventing It 55 6. Giving Care 59
Tips on Personal Care.. 61 Incontinence... 63 Bathing 65 Dressing. 69 Eating. 71
Oral Health Care for Older Adults with Dementia 75 Hospitalization 79 7. Self-Care 85
10 Ways to Be a Healthy Caregiver.. 87 10 Symptoms of Caregiver Stress.. 88 Alzheimers Disease: Impact on the Care Partner.. 89 Grief, Mourning and Guilt... 91 8. Financing 97
Helping the Person with Dementia Settle Financial Issues 99 Financial Resources. 101 9. Resources: Help IS Available 105
Alzheimers Association: Chapter Network.. 107 Alzheimers Association 24/7 Helpline.. 109 Area Agencies on Aging... 111 Community Resources Internet Links. 115 Your Local Organizations. 119 10. Personal Information and Record Keeping 123
Physician or Health Provider Assessment of Individual Needs.. 125 Personal Health Record (PHR) Checklist.. 131 11. Poems to Lift Your Spirit 135
Childish Laughter.. 137 Laughing Now 137 Shared Laughter 137 Yesterdays Eyes, a Poem for Caregivers 139
1.ImportantFacts

WhatisAlzheimersDisease? AlzheimersDiseaseandOtherDementias 10WarningSignsofAlzheimers StatisticsonAlzheimersDiseaseandRelatedDementias2009
Summary: Dementiaisabroadtermforagroupofsymptomsrelatedtoaprogressivedeclinein thinkingskills.Thereareapproximately5.3millionAmericanswithAlzheimers disease,whichistheleadingcauseofdementia.Othertypesofdementiaincludemild cognitiveimpairment,vasculardementia,mixeddementia,dementiawithLewy bodies,Parkinsonsdisease,frontotemporaldementia,CreutzfeldtJakobdisease, normalpressurehydrocephalus,Huntingtonsdisease,andWernickeKorsakoff syndrome. Thissectionwillanswer:

WhatarequickfactsaboutAlzheimersdisease? Whatotherdiseasescausedementia? WhatarethewarningsignsofAlzheimersdisease?
What is Alzheimer's Disease?

Alzheimer's disease (AD) is an age-related, non-reversible brain disorder that develops over a period of years. Initially, people experience memory loss and confusion, which may be mistaken for the kinds of memory changes that are sometimes associated with normal aging. However, the symptoms of AD gradually lead to behavior and personality changes, a decline in cognitive abilities such as decision-making and language skills, and problems recognizing family and friends. AD ultimately leads to a severe loss of mental function. These losses are related to the worsening breakdown of the connections between certain neurons in the brain and their eventual death. AD is one of a group of disorders called dementias that are characterized by cognitive and behavioral problems. It is the most common cause of dementia among people age 65 and older. There are three major hallmarks in the brain that are associated with the disease processes of AD. Amyloid plaques, which are made up of fragments of a protein called beta-amyloid peptide mixed with a collection of additional proteins, remnants of neurons, and bits and pieces of other nerve cells. Neurofibrillary tangles (NFTs), found inside neurons, are abnormal collections of a protein called tau. Normal tau is required for healthy neurons. However, in AD, tau clumps together. As a result, neurons fail to function normally and eventually die. Loss of connections between neurons responsible for memory and learning. Neurons can't survive when they lose their connections to other neurons. As neurons die throughout the brain, the affected regions begin to atrophy, or shrink. By the final stage of AD, damage is widespread and brain tissue has shrunk significantly.
Is there any treatment?

Currently there are no medicines that can slow the progression of AD. However, four FDAapproved medications are used to treat AD symptoms. These drugs help individuals carry out the activities of daily living by maintaining thinking, memory, or speaking skills. They can also help with some of the behavioral and personality changes associated with AD. However, they will not stop or reverse AD and appear to help individuals for only a few months to a few years. Donepezil (Aricept), rivastigmine (Exelon), and galantamine (Reminyl) are prescribed to treat mild to moderate AD symptoms. Donepezil was recently approved to treat severe AD as well. The newest AD medication is memantine (Namenda), which is prescribed to treat moderate to severe AD symptoms.
What is the prognosis?

In a very few families, people develop AD in their 30s, 40s, and 50s. This is known as "early onset" AD. These individuals have a mutation in one of three different inherited genes that causes the disease to begin at an earlier age. More than 90 percent of AD develops in people older than 65. This form of AD is called "late-onset" AD, and its development and pattern of damage in the brain is similar to that of early-onset AD. The course of this disease varies from
person to person, as does the rate of decline. In most people with AD, symptoms first appear after age 65. We don't yet completely understand the causes of late-onset AD, but they probably include genetic, environmental, and lifestyle factors. Although the risk of developing AD increases with age, AD and dementia symptoms are not a part of normal aging. There are also some forms of dementia that aren't related to brain diseases such as AD, but are caused by systemic abnormalities such as metabolic syndrome, in which the combination of high blood pressure, high cholesterol, and diabetes causes confusion and memory loss.
What research is being done?

The National Institute of Neurological Disorders and Stroke (NINDS) supports basic and translational research related to AD through grants to major medical institutions across the country. Current studies are investigating how the development of beta amyloid plaques damages neurons, and how abnormalities in tau proteins create the characteristic neurofibrillary tangles of AD. Other research is exploring the impact of risk factors associated with the development of AD, such as pre-existing problems with blood flow in the blood vessels of the brain. Most importantly, the NINDS supports a number of studies that are developing and testing new and novel therapies that can relieve the symptoms of AD and potentially lead to a cure.
Last updated April 27, 2009 by the National Institute of Neurological Disorders and Stroke
Alzheimers Disease and Other Dementias

About dementia Dementia is a general term for a group of brain disorders. Alzheimers disease is the most common type of dementia, accounting for 50 to 70 percent of cases. This fact sheet briefly discusses Alzheimers and some other dementias. All types of dementia involve mental decline that: occurred from a higher level (for example, the person didnt always have a poor memory) is severe enough to interfere with usual activities and daily life affects more than one of the following four core mental abilities recent memory (the ability to learn and recall new information) language (the ability to write or speak, or to understand written or spoken words) visuospatial function (the ability to understand and use symbols, maps, etc., and the brains ability to translate visual signals into a correct impression of where objects are in space) executive function (the ability to plan, reason, solve problems and focus on a task) Alzheimers disease Although symptoms can vary widely, the first problem many people with Alzheimers notice is forgetfulness severe enough to affect their work, lifelong hobbies or social life. Other symptoms include confusion, trouble with organizing and expressing thoughts, misplacing things, getting lost in familiar places, and changes in personality and behavior. These symptoms result from damage to the brains nerve cells. The disease gradually gets worse as more cells are damaged and destroyed. Scientists do not yet know why brain cells malfunction and die, but two prime suspects are abnormal microscopic structures called plaques and tangles. For more detailed information about Alzheimers disease, please visit our Web site www.alz.org or contact us at 1.800.272.3900. Mild cognitive impairment (MCI) In MCI, a person has problems with memory or one of the other core functions affected by dementia. These problems are severe enough to be noticeable to other people and to show up on tests of mental function, but not serious enough to interfere with daily life. When symptoms do not disrupt daily activities, a person does not meet criteria for being diagnosed with dementia. The best-studied type of MCI involves a memory problem. Individuals with MCI have an increased risk of developing Alzheimers disease over the next few years, especially when their main problem involves memory. However, not everyone diagnosed with MCI progresses to Alzheimers or another kind of dementia. Vascular dementia (VaD) Many experts consider vascular dementia the second most common type, after Alzheimers disease. It occurs when clots block blood flow to parts of the brain, depriving nerve cells of
1.800.272.3900 | www.alz.org
2007 Alzheimers Association. All rights reserved. This is an official publication of the Alzheimers Association but may be distributed by unaffiliated organizations and individuals. Such distribution does not constitute an endorsement of these parties or their activities by the Alzheimers Association.
food and oxygen. If it develops soon after a single major stroke blocks a large blood vessel, it is sometimes called post-stroke dementia. It can also occur when a series of very small strokes, or infarcts, clog tiny blood vessels. Individually, these strokes do not cause major symptoms, but over time their combined effect is damaging. This type used to be called multi-infarct dementia. Symptoms of vascular dementia can vary, depending on the brain regions involved. Forgetfulness may or may not be a prominent symptom, depending on whether memory areas are affected. Other common symptoms include difficulty focusing attention and confusion. Decline may occur in steps, where there is a fairly sudden change in function. People who develop vascular dementia may have a history of heart attacks. High blood pressure or cholesterol, diabetes or other risk factors for heart disease are often present. Mixed dementia In mixed dementia, Alzheimers disease and vascular dementia occur at the same time. Many experts believe mixed dementia develops more often than was previously realized and that it may become increasingly common as people age. This belief is based on autopsies showing that the brains of up to 45 percent of people with dementia have signs of both Alzheimers and vascular disease. Decline may follow a pattern similar to either Alzheimers or vascular dementia or a combination of the two. Some experts recommend suspecting mixed dementia whenever a person has both (1) evidence of cardiovascular disease and (2) dementia symptoms that get worse slowly. Dementia with Lewy bodies (DLB) In DLB, abnormal deposits of a protein called alpha-synuclein form inside the brains nerve cells. These deposits are called Lewy bodies after the scientist who first described them. Lewy bodies have been found in several brain disorders, including dementia with Lewy bodies, Parkinsons disease and some cases of Alzheimers. Symptoms of DLB include: Memory problems, poor judgment, confusion and other symptoms that can overlap with Alzheimers disease Movement symptoms are also common, including stiffness, shuffling walk, shakiness, lack of facial expression, problems with balance and falls Excessive daytime drowsiness Visual hallucinations Mental symptoms and level of alertness may get better or worse (fluctuate) during the day or from one day to another In about 50 percent of cases, DLB is associated with a condition called rapid eye movement (REM) sleep disorder. REM sleep is the stage where people usually dream. During normal REM sleep, body movement is blocked and people do not act out their dreams. In REM sleep disorder, movements are not blocked and people act out their dreams, sometimes vividly and violently.
1.800.272.3900 | www.alz.org
Parkinsons disease (PD) Parkinsons is another disease involving Lewy bodies. The cells that are damaged and destroyed are chiefly in a brain area important in controlling movement. Symptoms include tremors and shakiness; stiffness; difficulty with walking, muscle control, and balance; lack of facial expression; and impaired speech. Many individuals with Parkinsons develop dementia in later stages of the disease. Frontotemporal dementia (FTD) FTD is a rare disorder chiefly affecting the front and sides of the brain. Because these regions often, but not always, shrink, brain imaging can help in diagnosis. There is no specific abnormality found in the brain in FTD. In one type called Picks disease, there are sometimes (but not always) abnormal microscopic deposits called Pick bodies. FTD progresses more quickly than Alzheimers disease and tends to occur at a younger age. The first symptoms often involve changes in personality, judgment, planning and social skills. Individuals may make rude or off-color remarks to family or strangers, or make unwise decisions about finances or personal matters. They may show feelings disconnected from the situation, such as indifference or excessive excitement. They may have an unusually strong urge to eat and gain weight as a result. Creutzfeldt-Jakob disease (CJD) Creutzfeldt-Jakob disease (pronounced CROYZ-felt YAH-cob) is a rare, rapidly fatal disorder affecting about 1 in a million people per year worldwide. It usually affects individuals older than 60. CJD is one of the prion (PREE-awn) diseases. These disorders occur when prion protein, a protein normally present in the brain, begins to fold into an abnormal threedimensional shape. This shape gradually triggers the protein throughout the brain to fold into the same abnormal shape, leading to increasing damage and destruction of brain cells. Recently, variant Creutzfeldt-Jakob disease (vCJD) was identified as the human disorder believed to be caused by eating meat from cattle affected by mad cow disease. It tends to occur in much younger individuals, in some cases as early as their teens. The first symptoms of CJD may involve impairment in memory, thinking and reasoning or changes in personality and behavior. Depression or agitation also tend to occur early. Problems with movement may be present from the beginning or appear shortly after the other symptoms. CJD progresses rapidly and is usually fatal within a year. Normal pressure hydrocephalus (NPH) Normal pressure hydrocephalus (high-droh-CEFF-a-luss) is another rare disorder in which fluid surrounding the brain and spinal cord is unable to drain normally. The fluid builds up, enlarging the ventricles (fluid-filled chambers) inside the brain. As the chambers expand, they can compress and damage nearby tissue. Normal pressure refers to the fact that the spinal fluid pressure often, although not always, falls within the normal range on a spinal tap. The three chief symptoms of NPH are (1) difficulty walking, (2) loss of bladder control and (3) mental decline, usually involving an overall slowing in understanding and reacting to
1.800.272.3900 | www.alz.org
information. A persons responses are delayed, but they tend to be accurate and appropriate to the situation when they finally come. NPH can occasionally be treated by surgically inserting a long thin tube called a shunt to drain fluid from the brain to the abdomen. Certain television broadcasts and commercials have portrayed NPH as a highly treatable condition that is often misdiagnosed as Alzheimers or Parkinsons disease. However, most experts believe it is unlikely that significant numbers of people diagnosed with Alzheimers or Parkinsons actually have NPH that could be corrected with surgery. NPH is rare, and it looks different from Alzheimers or Parkinsons to a physician with experience in assessing brain disorders. When shunting surgery is successful, it tends to help more with walking and bladder control than with mental decline. Huntingtons disease (HD) HD is a fatal brain disorder caused by inherited changes in a single gene. These changes lead to destruction of nerve cells in certain brain regions. Anyone with a parent with Huntingtons has a 50 percent chance of inheriting the gene, and everyone who inherits it will eventually develop the disorder. In about 1 to 3 percent of cases, no history of the disease can be found in other family members. The age when symptoms develop and the rate of progression vary. Symptoms of Huntingtons disease include twitches, spasms, and other involuntary movements; problems with balance and coordination; personality changes; and trouble with memory, concentration or making decisions. Wernicke-Korsakoff syndrome Wernicke-Korsakoff syndrome is a two-stage disorder caused by a deficiency of thiamine (vitamin B-1). Thiamine helps brain cells produce energy from sugar. When levels of the vitamin fall too low, cells are unable to generate enough energy to function properly. Wernicke encephalopathy is the first, acute phase, and Korsakoff psychosis is the long-lasting, chronic stage. The most common cause is alcoholism. Symptoms of Wernicke-Korsakoff syndrome include: confusion, permanent gaps in memory and problems with learning new information individuals may have a tendency to confabulate, or make up information they cant remember unsteadiness, weakness and lack of coordination If the condition is caught early and drinking stops, treatment with high-dose thiamine may reverse some, but usually not all, of the damage. In later stages, damage is more severe and does not respond to treatment. The Alzheimers Association is the leading voluntary health organization in Alzheimer care, support and research. Updated September 2006
1.800.272.3900 | www.alz.org
10 warning signs of Alzheimer's:

Memory changes that disrupt daily life
One of the most common signs of Alzheimer's, especially in the early stages, is forgetting recently learned information. Others include forgetting important dates or events; asking for the same information over and over; relying on memory aides (e.g., reminder notes or electronic devices) or family members for things they used to handle on their own. What's typical? Sometimes forgetting names or appointments, but remembering them later.
Challenges in planning or solving problems

Some people may experience changes in their ability to develop and follow a plan or work with numbers. They may have trouble following a familiar recipe or keeping track of monthly bills. They may have difficulty concentrating and take much longer to do things than they did before. What's typical? Making occasional errors when balancing a checkbook.
Difficulty completing familiar tasks at home, at work or at leisure

People with Alzheimer's often find it hard to complete daily tasks. Sometimes, people may have trouble driving to a familiar location, managing a budget at work or remembering the rules of a favorite game. What's typical? Occasionally needing help to use the settings on a microwave or to record a television show.
2009Alzheimer'sAssociation.Allrightsreserved.ReprintedwithpermissionoftheAlzheimers Association.
Confusion with time or place

People with Alzheimer's can lose track of dates, seasons and the passage of time. They may have trouble understanding something if it is not happening immediately. Sometimes they may forget where they are or how they got there. What's typical? Getting confused about the day of the week but figuring it out later.
Trouble understanding visual images and spatial relationships

For some people, having vision problems is a sign of Alzheimer's. They may have difficulty reading, judging distance and determining color or contrast. In terms of perception, they may pass a mirror and think someone else is in the room. They may not realize they are the person in the mirror. What's typical? Vision changes related to cataracts.
New problems with words in speaking or writing

People with Alzheimer's may have trouble following or joining a conversation. They may stop in the middle of a conversation and have no idea how to continue or they may repeat themselves. They may struggle with vocabulary, have problems finding the right word or call things by the wrong name (e.g., calling a "watch" a "hand-clock"). What's typical? Sometimes having trouble finding the right word.
Misplacing things and losing the ability to retrace steps

A person with Alzheimer's disease may put things in unusual places. They may lose things and be unable to go back over their steps to find them again. Sometimes, they may accuse others of stealing. This may occur more frequently over time.
What's typical? Misplacing things from time to time, such as a pair of glasses or the remote control.
Decreased or poor judgment

People with Alzheimer's may experience changes in judgment or decision-making. For example, they may use poor judgment when dealing with money, giving large amounts to telemarketers. They may pay less attention to grooming or keeping themselves clean. What's typical? Making a bad decision once in a while.
Withdrawal from work or social activities

A person with Alzheimer's may start to remove themselves from hobbies, social activities, work projects or sports. They may have trouble keeping up with a favorite sports team or remembering how to complete a favorite hobby. They may also avoid being social because of the changes they have experienced. What's typical? Sometimes feeling weary of work, family and social obligations.
Changes in mood and personality

The mood and personalities of people with Alzheimer's can change. They can become confused, suspicious, depressed, fearful or anxious. They may be easily upset at home, at work, with friends or in places where they are out of their comfort zone. What's typical? Developing very specific ways of doing things and becoming irritable when a routine is disrupted.
The difference between Alzheimer's and typical age-related changes

Signs of Alzheimer's
Poor judgment and decision making Inability to manage a budget Losing track of the date or the season Difficulty having a conversation Misplacing things and being unable to retrace steps to find them
Typical age-related changes

Making a bad decision once in a while Missing a monthly payment Forgetting which day it is and remembering later Sometimes forgetting which word to use Losing things from time to time
Statistics on Alzheimers Disease and Related Dementias - 2009

Alzheimers in America Approximately 5.3 million Americans have Alzheimers Disease. 5.1 million of them are aged 65 and older. Someone in America develops Alzheimers every 70 seconds. By 2050, an American will develop Alzheimers every 33 seconds. Alzheimers was the sixth-leading cause of death in the US in 2006. It was the fifthleading cause of death for people aged 65 and older. The number of people with Alzheimers is expected to grow. By 2030, 7.7 million Americans aged 65 and older will have the disease. By 2050, 11-16 million Americans aged 65 and older will have Alzheimers.
Impact on Families More than 70 percent of people with Alzheimers live at home, where family and friends provide most of their care. As the disease progresses, it places physical, emotional, and financial stress on caregivers as they assume growing responsibilities that may include meeting physical needs, managing daily routines, and making important medical and legal decisions. Almost 10 million Americans care for someone with Alzheimers. They provide 8.5 billion hours of care at a value of $94 billion. In North Carolina, over 317,000 caregivers provided more than $3 billion worth of care in 2008. 10% of caregivers live more than two hours away from the person they provide care for. Another 4% live one to two hours away. Caregivers provide care for many years. At any given time, 32% of caregivers have been providing care for five years or longer. Caregivers for people with Alzheimers and other dementias face high levels of stress. About one-third have symptoms of depression.
Impact on Government, Long-Term Care and Business In 2004, average Medicare costs for people aged 65 and older with Alzheimers were three times higher than other beneficiaries in the same age group. Average payments for Alzheimers patients were also higher for private insurance companies and the Department of Veterans Affairs. Medicare beneficiaries aged 65 and older with Alzheimers were 3.1 times as likely as others in the same age group to be admitted to the hospital in 2004. Medicare beneficiaries aged 65 and older with Alzheimers were eight times more likely as others in the same age group to stay in a nursing home in 2004. About 25% of Medicare beneficiaries aged 65 and older who received home health care services were people with Alzheimers. 44% of nursing home residents in North Carolina (2007) had severe cognitive impairment. Assisted living facility costs ranged from $36,000 a year for basic care to $51,000 for specialized Alzheimers care. Nursing home care costs averaged $77,000 for a private room and averaged nearly $80,000 for a private room in Alzheimers special care units.
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
2.Diagnosis
AlzheimersDisease:Diagnosis TellingOthersAboutanAlzheimerDiagnosis
Summary: ThediagnosisofAlzheimersdiseaseoftenconsistsofvarioustests.Thissection providesanoverviewofhowdoctorsmaytestapersonforAlzheimersdisease, includingsuchtopicsasmedicalhistory,mentalstatusevaluation,physical examination,andneurologicalexamination,amongothers.
Thissectionwillanswer:
HowdoesadoctormakeadiagnosisofAlzheimersdisease? HowshouldItellthepersonwithAlzheimersdiseaseaboutthediagnosis?
Telling Others About an Alzheimer Diagnosis

When you learn that someone you care about has Alzheimers, you may hesitate to tell the person that he or she has the disease. You may also have a hard time deciding whether to tell family and friends. Once you are emotionally ready to discuss the diagnosis, how will you break the news? Here are some suggestions for talking about the disease with others. Respect the persons right to know You may want to protect the person by withholding information. But your loved one is an adult with the right to know the truth. It can be a relief to hear the diagnosis, especially if the person had suspected he or she had Alzheimers disease. In many cases, people who are diagnosed early are able to participate in important decisions about their healthcare and legal and financial planning. While there is no current cure for Alzheimers, life will not stop with the diagnosis. There are treatments and services that can make life better for everyone.
Plan how to tell the person Talk with doctors, social workers and others who work with people who have Alzheimers to plan an approach for discussing the diagnosis. Consider a family conference to tell the person about the diagnosis. He or she may not remember the discussion, but may remember that people cared enough to come together. You may need to have more than one meeting to cover the details. Shape the discussion to fit the persons emotional state, medical condition and ability to remember and make decisions. Pick the best time to talk about the diagnosis. People with Alzheimers may be more receptive to new information at different times of the day. Dont provide too much information at once. Listen carefully to the person. They often signal the amount of information they can deal with through their question and reactions. Later, you can explain the symptoms of Alzheimers and talk about planning for the future and getting support.
Help the person accept the diagnosis The person may not understand the meaning of the diagnosis or may deny it. Accept such reactions and avoid further explanations. If they respond well, try providing additional information. The person with Alzheimers may forget the initial discussion but not the emotion involved. If telling them upsets them, hearing additional details may trigger the same reaction later.
1.800.272.3900 | www.alz.org
Reassure your loved one. Express your commitment to help and give support. Let the person know that you will do all you can to keep your lives fulfilling. Be open to the persons need to talk about the diagnosis and his or her emotions. Look for nonverbal signs of sadness, anger or anxiety. Respond with love and reassurance. Encourage the person to join a support group for individuals with memory loss. Your local Alzheimers Association can help you locate a group. To find an Association near you, please call 1.800.272.3900 or go to www.alz.org.
Telling family and friends An Alzheimer diagnosis doesnt only affect the person receiving it. The lives of family members and friends may also drastically change. Be honest with family and friends about the persons diagnosis. Explain that Alzheimers is a brain disease, not a psychological or emotional disorder. Share educational materials from the Alzheimers Association. The more that people learn about the disease, the more comfortable they may feel around the person. Invite family to support groups sponsored by your local Alzheimers Association. Realize that some people may drift out of your life, as they may feel uncomfortable around the person or may not want to help provide care. Alzheimers disease can also impact children and teens. Just as with any family member, be honest about the persons diagnosis with the young people in your life. Encourage them to ask questions. The Alzheimers Association is the leading voluntary health organization in Alzheimer care, support and research. Updated September 2007
1.800.272.3900 | www.alz.org
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
3.StagesandProgression
StagesofAlzheimersDisease
Summary: ThissectiondescribeseachofthesevenstagesofAlzheimersdisease.Understanding thesestagescanhelpyoubettermeettheneedsofyourlovedonebyknowingwhat thepersonwithAlzheimerscanstillmanage.
HowdoesAlzheimersdiseaseprogress?
Stages of Alzheimer's Disease

Experts have documented common patterns of symptom progression that occur in many individuals with Alzheimers disease and developed several methods of staging based on these patterns. Progression of symptoms corresponds in a general way to the underlying nerve cell degeneration that takes place in Alzheimers disease. Nerve cell damage typically begins with cells involved in learning and memory and gradually spreads to cells that control other aspects of thinking, judgment and behavior. The damage eventually affects cells that control and coordinate movement. Staging systems provide useful frames of reference for understanding how the disease may unfold and for making future plans. But it is important to note that all stages are artificial benchmarks in a continuous process that can vary greatly from one person to another. Not everyone will experience every symptom and symptoms may occur at different times in different individuals. People with Alzheimers die an average of four to six years after diagnosis, but the duration of the disease can vary from three to 20 years. The framework for this fact sheet is a system that outlines key symptoms characterizing seven stages ranging from unimpaired function to very severe cognitive decline. This framework is based on a system developed by Barry Reisberg, M.D., Clinical Director of the New York University School of Medicines Silberstein Aging and Dementia Research Center. Within this framework, we have noted which stages correspond to the widely used concepts of mild, moderate, moderately severe and severe Alzheimers disease. We have also noted which stages fall within the more general divisions of early-stage, mid-stage and late-stage categories. Stage 1: No cognitive impairment Unimpaired individuals experience no memory problems and none are evident to a health care professional during a medical interview. Stage 2: Very mild decline Individuals at this stage feel as if they have memory lapses, forgetting familiar words or names or the location of keys, eyeglasses or other everyday objects. But these problems are not evident during a medical examination or apparent to friends, family or co-workers. Stage 3: Mild cognitive decline Early-stage Alzheimers can be diagnosed in some, but not all, individuals with these symptoms Friends, family or co-workers begin to notice deficiencies. Problems with memory or concentration may be measurable in clinical testing or discernible during a detailed medical interview. Common difficulties include: Word- or name-finding problems noticeable to family or close associates Decreased ability to remember names when introduced to new people
1.800.272.3900 | www.alz.org
Performance issues in social and work settings noticeable to others Reading a passage and retaining little material Losing or misplacing a valuable object Decline in ability to plan or organize
Stage 4: Moderate cognitive decline (Mild or early-stage Alzheimers disease) At this stage, a careful medical interview detects clear-cut deficiencies in the following areas: Decreased knowledge of recent events Impaired ability to perform challenging mental arithmetic. For example, to count backward from 100 by 7s Decreased capacity to perform complex tasks, such as marketing, planning dinner for guests, or paying bills and managing finances Reduced memory of personal history The affected individual may seem subdued and withdrawn, especially in socially or mentally challenging situations Stage 5: Moderately severe cognitive decline (Moderate or mid-stage Alzheimers disease) Major gaps in memory and deficits in cognitive function emerge. Some assistance with day-today activities becomes essential. At this stage, individuals may: Be unable during a medical interview to recall such important details as their current address, their telephone number, or the name of the college or high school from which they graduated Become confused about where they are or about the date, day of the week or season Have trouble with less challenging mental arithmetic; for example, counting backward from 40 by 4s or from 20 by 2s Need help choosing proper clothing for the season or the occasion Usually retain substantial knowledge about themselves and know their own name and the names of their spouse or children Usually require no assistance with eating or using the toilet Stage 6: Severe cognitive decline (Moderately severe or mid-stage Alzheimers disease) Memory difficulties continue to worsen, significant personality changes may emerge, and affected individuals need extensive help with daily activities. At this stage, individuals may: Lose most awareness of recent experiences and events as well as of their surroundings Recollect their personal history imperfectly, although they generally recall their own name Occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces Need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet
1.800.272.3900 | www.alz.org
Experience disruption of their normal sleep/waking cycle Need help with handling details of toileting (flushing toilet, wiping and disposing of tissue properly) Have increasing episodes of urinary or fecal incontinence Experience significant personality changes and behavioral symptoms, including suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding Tend to wander and become lost
Stage 7: Very severe cognitive decline (Severe or late-stage Alzheimers disease) This is the final stage of the disease when individuals lose the ability to respond to their environment, the ability to speak, and, ultimately, the ability to control movement. Frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered Individuals need help with eating and toileting and there is general incontinence Individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired. The Alzheimers Association is the leading voluntary health organization in Alzheimer care, support and research. Updated October 2003
1.800.272.3900 | www.alz.org
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
4.Medications
AlzheimersDiseaseMedications TakingMedicationSafely
Summary: Choosingtherightmedicationforalovedonewithdementiaisfrequentlyaconcern forcaregivers.Thissectionprovidesanoverviewofhowmedicationsworkandhow tousethemsafely.
WhattreatmentsarecurrentlyavailableforAlzheimersdisease? Whataresomesafetytipsforgivingmedicationstothepersonwithdementia?
Alzheimers Disease Medications

FA C T S H E E T
everal prescription drugs are currently approved by the U.S. Food and Drug Administration (FDA) to treat people who have been diagnosed with Alzheimers disease (AD). Treating the symptoms of AD can provide patients with comfort, dignity, and independence for a longer period of time and can encourage and assist their caregivers as well.
No published study directly compares these drugs. Because they work in a similar way, switching from one of these drugs to another probably will not produce significantly different results. However, an AD patient may respond better to one drug than another.
Treatment for Moderate to Severe AD

A medication known as Namenda (memantine), an N-methyl D-aspartate (NMDA) antagonist, is prescribed to treat moderate to severe AD. This drugs main effect is to delay progression of some of the symptoms of moderate to severe AD. It may allow patients to maintain certain daily functions a little longer than they would without the medication. For example, Namenda may help a patient in the later stages of AD maintain his or her ability to use the bathroom independently for several more months, a benefit for both patients and caregivers. Namenda is believed to work by regulating glutamate, an important brain chemical. When produced in excessive amounts, glutamate may lead to brain cell death. Because NMDA antagonists work very differently from cholinesterase inhibitors, the two types of drugs can be prescribed in combination. The FDA has also approved Aricept for the treatment of moderate to severe AD.
(continued on back)
It is important to understand that none of these medications stops the disease itself.
Treatment for Mild to Moderate AD

The medications include Razadyne (galantamine, formerly known as Reminyl and now available as a generic drug), Exelon(rivastigmine), and Aricept (donepezil). Another drug, Cognex (tacrine), was the first approved cholinesterase inhibitor but is rarely prescribed today due to safety concerns. Scientists do not yet fully understand how cholinesterase inhibitors work to treat AD, but research indicates that they prevent the breakdown of acetylcholine, a brain chemical believed to be important for memory and thinking. As AD progresses, the brain produces less and less acetylcholine; therefore, cholinesterase inhibitors may eventually lose their effect.
Alzheimers Disease Education & Referral (ADEAR) Center A Service of the National Institute on Aging National Institutes of Health U.S. Department of Health and Human Services
Medications to Treat
This brief summary does not include all information import for professional medical advice. Consult the prescribing d any other medications or supplements. Drugs are listed
DRUG NAME
Namenda (memantine)
DRUG TYPE AND USE

N-methyl D-aspartate (NMDA) antagonist prescribed to treat symptoms of moderate to severe AD
HOW IT WORKS
Blocks the toxic effects associated with excess glutamate and regulates glutamate activation
COMMON SIDE EFFECTS

Dizziness, headache, constipation, confusion
Razadyne (galantamine) Also available as a generic drug
Cholinesterase inhibitor prescribed to treat symptoms of mild to moderate AD
Prevents the breakdown of acetylcholine and stimulates nicotinic receptors to release more acetylcholine in the brain
Nausea, vomiting, diarrhea, weight loss, loss of appetite
Exelon (rivastigmine)
Cholinesterase inhibitor prescribed to treat symptoms of mild to moderate AD
Prevents the breakdown of acetylcholine and butyrylcholine (a brain chemical similar to acetylcholine) in the brain
Nausea, vomiting, diarrhea, weight loss, loss of appetite, muscle weakness
Aricept (donepezil)
Cholinesterase inhibitor prescribed to treat symptoms of mild to moderate, and moderate to severe AD
Prevents the breakdown of acetylcholine in the brain
Nausea, vomiting, diarrhea
Alzheimers Disease
tant for patient use and should not be used as a substitute doctor and read the package insert before using these or in order of FDA approval, starting with the most recent.
MANUFACTURERS RECOMMENDED DOSAGE

Initial dose: 5-mg tablet once a day May increase dose to 10 mg/day (5 mg twice a day), 15 mg/day (5 mg and 10 mg as separate doses), and 20 mg/day (10 mg twice a day) at minimum 1-week intervals if well tolerated Also available as oral solution; same dosage as above Tablet: Initial dose of 8 mg/day (4 mg twice a day) May increase dose to 16 mg/day (8 mg twice a day) and 24 mg/day (12 mg twice a day) at minimum 4-week intervals if well tolerated Extended-release capsule: Same dosage as above but taken once a day Also available as oral solution; same dosage as above Capsule: Initial dose of 3 mg/day (1.5 mg twice a day) May increase dose to 6 mg/day (3 mg twice a day), 9 mg (4.5 mg twice a day), and 12 mg/day (6 mg twice a day) at minimum 2-week intervals if well tolerated Patch: Initial dose of 4.6 mg once a day; may increase to 9.5 mg once a day after minimum of 4 weeks if well tolerated Also available as oral solution; same dosage as capsule Initial dose: 5-mg tablet once a day May increase dose to 10 mg/day after 4-6 weeks if well tolerated
FOR MORE INFORMATION

For current information about this drugs safety and use, visit www.namenda.com. Click on Prescribing Information to see the drug label.
For current information about this drugs safety and use, visit www.razadyneer.com. Click on Important Safety Information to see links to prescribing information.
For current information about this drugs safety and use, visit www.fda.gov/cder. Click on Drugs@FDA, search for Exelon, and click on drug-name links to see Label Information.
For current information about this drugs safety and use, visit www.fda.gov/cder. Click on Drugs@FDA, search for Aricept, and click on drug-name links to see Label Information.
(continued from front)
Dosage and Side Effects

Doctors usually start patients at low drug doses and gradually increase the dosage based on how well a patient tolerates the drug. There is some evidence that certain patients may benefit from higher doses of the cholinesterase inhibitors. However, the higher the dose, the more likely are side effects. The recommended effective dosages of drugs prescribed to treat the symptoms of AD and the drugs possible side effects are summarized in the table (see inside). Patients should be monitored when a drug is started. Report any unusual symptoms to the prescribing doctor right away. It is important to follow the doctors instructions when taking any medication, including vitamins
and herbal supplements. Also, let the doctor know before adding or changing any medications.
Testing New AD Drugs Clinical trials are the best way to find out if promising new treatments are safe and effective in humans. Volunteer participants are needed for many AD trials conducted around the United States. To learn more, talk with your doctor or visit the ADEAR Centers listing of clinical trials at www.nia.nih. gov/Alzheimers/ResearchInformation/ Clinical Trials. More information is available at www.ClinicalTrials.gov.
For More Information

To learn about support groups, research centers, research studies, and publications about AD, contact the following resources: Alzheimers Disease Education and Referral (ADEAR) Center P Box 8250 .O. Silver Spring, MD 20907-8250 800-438-4380 (toll-free) www.nia.nih.gov/Alzheimers A service of the National Institute on Aging (NIA), the ADEAR Center offers information and publications for families, caregivers, and professionals on diagnosis, treatment, patient care, caregiver needs, long-term care, education and training, and research related to AD. Staff members answer telephone, email, and written requests and make referrals
NIH Publication No. 08-3431
to local and national resources. The ADEAR website offers free, online publications in English and Spanish; email alert and online Connections newsletter subscriptions; an AD clinical trials database; the AD Library database; and more. Alzheimers Association 225 North Michigan Avenue, Floor 17 Chicago, IL 60601-7633 800-272-3900 (toll-free) 866-403-3073 (TDD/toll-free) www.alz.org The Alzheimers Association is a national nonprofit association with a network of local chapters that provide education and support for people diagnosed with AD, their families, and caregivers. The Association also supports research on AD.
November 2008
Taking Medication Safely

There is no medication to prevent or cure Alzheimers disease, but a number of drugs are used to treat Alzheimer symptoms. Physicians may also prescribe drugs to manage delusions and hallucinations, depression, agitation or sleeplessness. Although these medications can help manage symptoms, they can also produce side effects such as agitation, dry mouth, drowsiness, tremors, falling or constipation. Whats more, some medications can contribute to the persons problems and make some symptoms even worse. For example, a person who begins taking drugs for high blood pressure or a heart problem might appear to be more confused than before he or she began taking the drugs. As a caregiver, you need to understand the use of medications, and be alert to possible overmedication and adverse reactions. To understand the effects of medications and how to manage their use, consider the following tips. Get medical advice Be cautious about giving any medication, whether its an over-the-counter or prescription drugs. Begin by asking your physician to review all medication to check for possible drug interactions. Make sure that every physician involved with the persons care knows about all prescribed medications. Find out as much as possible about every medication, including name, purpose, dosage, frequency and possible side effects. If serious side effects occur, report them to the physician. Be prudent Use common sense when administering or obtaining medication. Under no circumstances should you change dosages without first consulting the physician. Avoid the temptation to over report symptoms in order to persuade your physician to prescribe a new drug or to increase the persons dosage. Do not share medications with other caregivers or save the bottles of old prescriptions. Rely on your pharmacist for information Pharmacists can be another information source. Your local pharmacist can also check for interaction between drugs. But keep in mind that pharmacists can neither prescribe drugs nor alter drug dosages. Maintain accurate and ongoing records Keep a written record of all current medications, including the name of the medication, dosage and starting date, and carry a copy of this list with you in your wallet or purse at all times. This record will be invaluable in the event of a serious drug interaction or overdose.
1.800.272.3900 | www.alz.org
Be candid and direct In clear, simple language help the individual understand the kinds of medications he or she is taking and why. In addition, offer clear instructions such as these: Heres the pill for your high blood pressure. Put it in your mouth and drink some water. Develop a routine for giving the medication Giving medications in a specific way at specific times of the day or evening will help reduce conflicts. However, if the person refuses to take the medication, stop and try again later. Never assume the individual will take medications on his or her own. It may be necessary to check and see whether the medicine has been swallowed. At some point, you may need to assume responsibility for giving the person medications. Stay organized Separating pills into a plastic container with small compartments labeled day and evening or Monday, Tuesday, Wednesday, etc., will help track medications. Some caregivers find it useful to give medications in individual cups or envelopes or to keep a calendar and check off each dose as its taken. Adapt to the person If the person has problems swallowing pills or spits out the pills, ask your physician if the medication is available in some other form, such as a liquid. Some medications can be crushed and mixed with food. However, no pill or tablet should be crushed without first consulting your physician or pharmacist. Crushing some medications may cause them to be ineffective or unsafe. Take safety precautions Put a lock on the medicine cabinet or place the medications in a locked drawer. If the person spits out pills, make sure these pills arent picked up and eaten by children or pets. Avoid leaving the person alone with medication bottles in the room. Be sure to throw out all old medicines. Be prepared for emergencies Research the names and telephone numbers of pharmacies or other services that deliver medications. Also find out the names of pharmacies that are open on Sundays and weekends. Keep the number of your local poison control center or emergency room handy. If you suspect a medication overdose, call poison control or 911 before taking any action. The Alzheimers Association is the leading voluntary health organization in Alzheimer care, support and research. Updated July 2007
1.800.272.3900 | www.alz.org
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
5.Safety

Safety SafetyChecklist Driving WanderingBehavior:PreparingforandPreventingIt
Summary: Thissectionprovidesinformationonhowyoucancreateasafeenvironmentforthe personwithdementiabothinsideandoutsidethehome. Thissectionwillanswer:

HowcanIcreateasafeenvironmentforthepersonwithdementia? Whenshouldthepersonwithdementiastopdriving? HowdoIkeepthepersonwithdementiafromwandering?

Safety
Providing for safety is an important job for caregivers. A safe environment can help prevent injuries, and it can help the person with dementia feel relaxed and less overwhelmed. To enhance safety, assess the environment for hazards. Try to see the world through the eyes of a person who has Alzheimers and adapt the environment to his or her needs. Focus on prevention Dont expect the person to do things safely. Eliminate potential hazards. Be patient and slow down. Accidents can happen when a person is rushed. Simplify routines and provide step-by-step guidance, especially during complex personal care activities such as bathing, toileting and dressing. Be prepared to balance safety with needs for privacy and independence. Be realistic. You cant anticipate every risk or prevent every problem.
Guard against choking and poisoning Due to changes in the brain, the person may not understand swallowing foreign substances could cause choking or poisoning. Lock cabinets and work rooms that contain toxic chemicals. Lock up all medications. Keep track of how many pills are being taken. Hide potentially dangerous toiletry items such as razor blades. Remove toxic plants such as poinsettias or mistletoe. Dont let food spoil in the refrigerator or pantry. Test the temperature of food before its served. The person may not be able to tell when food is too hot to eat. Be prepared for the unusual. Some people may eat items such as gravel and dirt. Be careful about knives, appliances and electric tools Be aware that the person may not remember how to use appliances and tools. Potential hazards include toaster ovens, stoves, coffee makers, power tools, lawn mowers and barbecue grills. Know that even apparently safe devices can be hazards. For example, a person may try to open a can by jabbing it with a screwdriver. Place at eye level appliances that the person can safely use. Discourage the person from entering the kitchen without you. Consider precautions such as locking up knives, hiding appliances and removing knobs from the stove when not in use. Unplug all heat-producing appliances, such as coffeemakers, when not in use. Consider turning off the gas and electricity in certain areas. Regularly check electrical cords for frays, breaks and other damage. Dont let electrical cords dangle. Put safety covers on electrical outlets.
1.800.272.3900 | www.alz.org
Be careful about heat, cold and fire Keep in mind that a person with Alzheimers may lose sensitivity to temperature extremes and may forget about their dangers. Be cautious about items such as stoves, space heaters, curling irons, microwaveprepared food, and electric blankets and heating pads. Take precaution against scalding hot water. Set your hot water heater to 110 degrees F. Install anti-scald devices on faucets. Help the person test water temperatures and mix cold water with hot. Avoid accidents associated with cooking and eating: o Turn pan handles toward the middle of the stovetop. o Do not let the person wear loose clothes while cooking. o Do not place containers of hot liquid near the edges of tables and countertops. o Pour hot liquids away from the persons body; keep the pot as far away as possible. o Test the temperature of microwave-prepared foods. o Use place mats instead of tablecloths. Listen for sizzling and crackling sounds that indicate something is heating up. Cover all light bulbs with shades or globes. Hide matches and cigarette lighters. Keep the person from smoking, if possible. Or supervise an individual with dementia while he or she smokes. Install fire extinguishers and smoke alarms; check them monthly. Prevent slips and falls Make sure the person wears non-skid shoes. Reduce clutter. Remove throw rugs, extension cords and other obstacles; dont let pets sleep in traffic areas. Provide sturdy items to lean against along frequently traveled paths. Avoid rearranging furniture. Make sure carpets are properly tacked down on all sides. Wipe up spills immediately. Make stairways safe. Keep them well-lit, provide handrails on both sides, make sure steps are even and uniformly deep, and consider using a contrasting color along the edge of steps. Install child-proof gates at both the head and foot of stairs. Make sure lighting is evenly distributed to avoid hot spots and shadows. Install night lights on the path to the bathroom. Ensure safety in bathrooms Install devices such as grab bars, bath seats and commode chairs. Put non-slip mats or appliqus in tubs and showers. Remove electrical appliances to reduce the chance of electrocution or shock. Install ground-fault outlets near all water sources.
1.800.272.3900 | www.alz.org
Prevent wandering Consider installing safety doorknobs. Put locks at the top or bottom of doors, out of the persons line of sight. Camouflage the outside door or place a dark rug in front of it to discourage the person from approaching. Get an intercom system (such as those used in infants rooms) or install Dutch doors, so you can stay aware of the persons activities while in another room. Hang chimes on doors. Install electronic alert alarms. Make sure the person wears an identification bracelet, like the one available through MedicAlert + Alzheimers Associations Safe Return. Get rid of guns Remove guns from the house. At minimum, lock guns away in a cabinet or drawer. Dont keep guns loaded; store ammunition in a separate place. Never let a person with Alzheimers handle a gun. Create emergency plans Prepare a list of emergency phone numbers, such as the police and fire departments, hospitals and poison control centers. Develop escape plans in case of fire. Recruit someone who lives nearby to help in case of emergency. Resources MedicAlert + Safe Return is a 24-hour nationwide emergency response service for individuals with Alzheimers or related dementia that wander or who have a medical emergency. To learn more or to enroll, contact your local Alzheimers Association, call 1.888.572.8566 or register online at www.alz.org. The Alzheimers Association is the leading voluntary health organization in Alzheimer care, support and research. Updated November 2007
1.800.272.3900 | www.alz.org
Tips For a Safe and Supportive Home
Safety Checklist
Kitchen o Lock up cleaning supplies o Turn off electricity to the garbage disposal o Hide knives and other utensils o Store small appliances (toaster, blender) o Unplug larger appliances (microwave) o Remove knobs from the stove; hook up stove to a hidden gas valve or electric switch o Keep fire extinguisher nearby o Clean out refrigerator regularly Bathroom o Set water temperature at 120 degrees or less o Install grab bars o Add textured stickers to slippery surfaces o Supervise the use of hair dryers, curling irons, and electric and hand razors o Remove locks from the bathroom door o Take dangerous items out of medicine chests Garage o Lock up hand and power tools (drills, axes, saws, picks) o Limit access to large equipment (lawn mower, weed trimmer) o Lock up poisonous chemicals (paint, fertilizers) Throughout the home o Disguise outdoor locks or install dead bolts o Remove or tape down throw rugs and carpeting o Apply colored stickers to large windows and sliding glass doors o Remove poisonous plants o Create an even level of lighting near doorways, stairways and between rooms o Remove objects that block walking paths o Remove and disable guns or other weapons Outdoors o Disconnect gas from gas grill o Lock fence gates o Supervise the person, especially in areas that are not enclosed o Put away car keys
2005 Alzheimers Association
1.800.272.3900
www.alz.org
Driving
Driving is a complex activity that requires quick thinking and reactions, as well as good perceptual abilities. For the person with Alzheimers disease, driving becomes a safety issue. While he or she may not recognize that changes in cognitive and sensory skills impair driving abilities, you and other family members will need to be firm in your efforts to prevent the person from driving when the time comes. That said, its important to consider the persons feelings and perceived loss of independence when explaining why he or she can no longer drive. Helping the person with dementia make the decision to stop driving before you have to force him or her to stop can help maintain a positive sense of self-esteem. How dangerous is it? Previous studies demonstrate that poor driving performance increases with increased dementia severity. However, not all people with Alzheimers are unsafe drivers at a given point in time. Whats more, drivers with dementia are not in more crashes than non-demented elderly drivers, suggesting that dementia should not be the sole justification for suspending driving privileges. Instead, an on-the-road driving test, or other functional test, is the best way to assess driving skills in dementia. Some state agencies have special drive tests to determine how well a person sees, judges distance and responds to traffic. Ask the person who administers the test to explain the results to you and the person with dementia. If your state does not offer special testing, private assessments (generally fee-for-service) may be available. Your local Alzheimers Association may be able to provide a list of these programs. How do you know when the time has come? There are also a number of steps you can take to assess the persons ability to drive. 1) Look for signs of unsafe driving Signs of unsafe driving include: Forgetting how to locate familiar places Failing to observe traffic signs Making slow or poor decisions in traffic Driving at an inappropriate speed Becoming angry or confused while driving Keep a written record of your observations to share with the person, family members and health care professionals. 2) Learn about your states driving regulations In some states, such as California, the physician must report a diagnosis of Alzheimers to the health department, which then reports it to the department of motor vehicles. That agency then may revoke the persons license. Check with your local Alzheimers Association for information on driving regulations in your state.
1.800.272.3900 | www.alz.org
Tips to limit driving Once its clear the person with dementia can no longer drive safely, youll need to get him or her out from behind the wheel as soon as possible. If possible, involve the person with dementia in the decision to stop driving. Explain your concerns about his or her unsafe driving, giving specific examples, and ask the person to voluntarily stop driving. Assure the person that a ride will be available if he or she needs to go somewhere. Other tips to discourage driving include: Transition driving responsibilities to others. Tell the person you can drive, arrange for someone else to drive, or arrange a taxi service or special transportation services for older adults. Find ways to reduce the persons need to drive. Have prescription medicines, groceries or meals delivered. Solicit the support of others. Ask your physician to advise the person with dementia not to drive. Involving your physician in a family conference on driving is probably more effective than trying by yourself to persuade the person not to drive. Ask the physician to write a letter stating that the person with Alzheimers must not drive. Or ask the physician to write a prescription that says, No driving. You can then use the letter or prescription to tell your family member whats been decided. Ask a respected family authority figure or your attorney to reinforce the message about not driving. Also ask your insurance agent to provide documentation that the person with dementia will no longer be provided with insurance coverage. Experiment with ways to distract the person from driving. Mention that someone else should drive because youre taking a new route, because driving conditions are dangerous, or because he or she is tired and needs to rest. Tell the person he or she deserves a chance to sit back and enjoy the scenery. You may also want to arrange for another person to sit in the back seat to distract the person while someone else drives. If the disease is in an advanced stage, or there is a history of anger and aggressiveness, its best not to drive alone with the person. If the person with dementia wanders, he or she can also wander and get lost by car. Be prepared for a wandering incident and enroll the person in MedicAlert + Alzheimers Association Safe Return, a 24-hour nationwide emergency response service for individuals with Alzheimer's or related dementia that wander or who have a medical emergency. To find out more information or to enroll, contact your local Alzheimers Association, call 1.888.572.8566 or register online at www.alz.org. In the later stages, when the person is no longer able to make decisions, substitute his or her drivers license with a photo identification card. Take no chances. Dont assume that taking away a drivers license will discourage driving. The person may not
1.800.272.3900 | www.alz.org
remember that he or she no longer has a license to drive or even that he or she needs a license. What if the person wont stop? If the person insists on driving, take these steps as a last resort: Control access to the car keys. Designate one person who will do all the driving and give that individual exclusive access to the car keys. Disable the car. Remove the distributor cap or the battery or starter wire. Ask a mechanic to install a kill wire that will prevent the car from starting unless the switch is thrown. Or give the person a set of keys that looks like his or her old set, but that dont work to start the car. Consider selling the car. By selling the car, you may be able to save enough in insurance premiums, gas and oil, and maintenance costs to pay for public transportation, including taxicab rides. In some states, it might be best to alert the department of motor vehicles. Write a letter directly to the authority and express your concerns, or request that the persons license be revoked. The letter should state that (the persons full name) is a hazard on the road, and offer the reason (Alzheimers disease). The state may require a statement form your physician that certifies the person is no longer able to drive.
The Alzheimers Association is the leading voluntary health organization in Alzheimer care, support and research. Updated July 2007
1.800.272.3900 | www.alz.org
Wandering Behavior: Preparing for and Preventing It

Alzheimers disease causes millions of Americans to lose their ability to recognize familiar places and faces. Six in 10 people with Alzheimers disease will wander. Many people cannot even remember their name or address. They may become disoriented and lost, even in their own neighborhood. Although common, wandering can be dangerous even life-threatening. The Alzheimers Association is working to help save lives through MedicAlert + Alzheimers Association Safe Return, a 24-hour nationwide emergency response service for individuals with Alzheimer's or related dementia that wander or who have a medical emergency. Here are tips to help caregivers prepare for and prevent wandering behavior. Wandering: Whos at risk? Anyone who: Returns from a regular walk or drive later than usual Tries to fulfill former obligations, such as going to work Tries to go home even when at home Is restless, paces or makes repetitive movements Has difficulty locating familiar places like the bathroom, bedroom or dining room Checks the whereabouts of familiar people Acts as if doing a hobby or chore, but nothing gets done (e.g. moves around pots and dirt without planting anything) Feels lost in a new or changed environment Consider behavior Be aware of who is at risk for wandering. Identify the most likely times of day that wandering may occur, and plan activities at that time. Provide opportunities for activities and exercise, such as folding towels, listening to music and dancing. When night wandering is a problem, make sure the person has restricted fluids two hours before bedtime and has gone to the bathroom just before bed. Limit daytime naps, if possible. Monitor reaction to medications. Consult a physician, if necessary Use communication focused on exploration and validation (not correcting) when the individual says that he or she want to leave to go home or to work. If wandering is in progress, use distraction to redirect the individuals focus. Consider the home environment Night-lights: Place throughout the home or facility. Locks*: Place out of the line of sight. Install slide bolts at the top or bottom of doors.
1.800.272.3900 | www.alz.org
Door knobs*: Cover knobs with cloth the same color as the door. Use childproof knobs. Doors*: Camouflage doors by painting them the same color as the walls. Cover them with removable curtains or screens. Use black tape or paint to create a two-foot black threshold in front of the door. Warning bells: Place above doors. Monitoring devices: Try devices that signal you when a door is opened. Place a pressure-sensitive mat at the door or person's bedside to alert you to movement. Hedges or fence*: Put around the patio, yard or other outside common areas. Safety gates or bright colored netting*: Use to bar access to stairs or the outdoors. Furniture*: Consider providing a recliner or geriatric chair for the individual to sit and rest. It is comfortable and yet restrictive to the body. Use round-cornered furniture, placed against the wall. Remove obstacles. Noise levels and confusion: Reduce excessive stimulation caused by movement or noise. Common areas: Develop indoor and outdoor areas that can be safely explored. Clothing: Provide the person with brightly colored clothing. Labeling*: Label all doors. Use signs or symbols to explain the purpose of each room. Secure trigger items: Some people will not go out without a coat, hat, pocketbook, keys, wallet, etc. Avoid leaving a person with dementia alone in a car.
Planning ahead Enroll in MedicAlert + Safe Return. Keep a list of people to call when feeling overwhelmed. Have their telephone numbers in one location. Ask neighbors, friends and family to call if they see the person alone or dressed inappropriately. Keep a recent, close-up photo on hand to give to police. Make sure that MedicAlert + Safe Return has an updated photo and medical information. Know your neighborhood. Pinpoint dangerous areas near the home, such as bodies of water, open stairwells, dense foliage, tunnels, bus stops and roads with heavy traffic. Is the individual right or left-handed? Wandering generally follows the direction of the dominant hand. Keep a list of places where the person may wander to, like past jobs, former homes or a church or restaurant. For safety and peace of mind, enroll in MedicAlert + Safe Return today: Call 1.888.572.8566 (6 a.m. - 7 p.m. (PST) Monday - Friday and 8 a.m. - 5 p.m. (PST) Saturday) or online at www.alz.org. The Alzheimers Association is the leading voluntary health organization in Alzheimer care, support and research. Updated November 2007
*These are meant to be suggestions only. Follow local, state and federal laws and codes.
1.800.272.3900 | www.alz.org
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
6.GivingCare

TipsonPersonalCare Incontinence Bathing Dressing Eating OralHealthCareforOlderAdultswithDementia Hospitalization
Summary: Thissectionprovidesinformationonhowyoucanbettertakecareofthepersonwith dementia.Tipsonprovidingpersonalcare,includingtoileting,bathing,dressing, feeding,andoralhealthcare,andhandlinghospitalstays,areincluded. Thissectionwillanswer:

Whataresomehelpfulhintsfortoileting,bathing,dressing,feeding,and maintainingoralhealthinthepersonwithdementia? WhatshouldIdoifthepersonwithdementiahastostayinthehospital?

Providing Personal Care
Tips on Personal Care

People with dementia slowly become less able to take care of themselves. At first, a person may need only prompting or a little help, but eventually caregivers will become responsible for all personal care. Loss of independence and privacy can be very difficult for the person with dementia. Caregivers must be aware of their loved ones reactions, abilities and fears to provide the necessary daily care. Eating Proper nutrition is important to keep the body strong and healthy. Regular, nutritious meals may become a challenge for people with dementia. They may become overwhelmed with too many food choices, forget to eat or think they have already eaten. To assist: Make mealtimes calm and comfortable. Serve meals in quiet surroundings, away from the television and other distractions. Keep the table setting simple, using only the utensils needed for the meal. Avoid placing items on the table that might distract or confuse the person. Offer one food item at a time. The person may be unable to decide among the foods on his or her plate. Serve only one or two foods at a time. For example, serve mashed potatoes followed by cooked meat. Encourage independence. Make the most of the persons abilities. Allow the person to eat from a bowl instead of a plate, with a spoon instead of a fork or even with his or her hands, if its easier. Be flexible to food preferences. It is possible the person may suddenly develop certain food preferences or reject foods he or she may have liked in the past. Be alert for signs of choking. The person may have trouble swallowing some foods. Guard against choking by avoiding foods that are difficult to chew thoroughly, like carrots.
Toileting It is common for persons with Alzheimers disease to experience loss of bladder and/or bowel control. This can be caused by many factors, including medications, stress, a physical condition, the environment and the persons clothing. If incontinence is a new problem, consult your doctor to rule out potential causes such as a urinary tract infection, weak pelvic muscles or medications. If the problem continues, try to: Provide visual cues. Signs may assist an individual in finding the bathroom. Placing colored rugs on the bathroom floor and lid covers on the toilet may help the bathroom stand out. Avoid having items nearby that can be mistaken for a toilet, such as a trash can. Monitor incontinence. Identify when accidents occur and plan accordingly. For example, if they happen every two hours, get the person to the bathroom before that time. To help control incontinence at night, limit the intake of liquids after dinner and in the evening. Remove obstacles. Make sure clothing is easy for the individual to remove. Provide reminders. People with Alzheimers often forget they need to use the bathroom periodically. Watch for visible cues such as restlessness or facial expressions that may indicate the person needs to use the bathroom. Be supportive. Help the person with Alzheimers retain a sense of dignity despite incontinence problems. A reassuring attitude will help lessen feelings of embarrassment.
1.800.272.3900
www.alz.org
Providing Personal Care
Dressing Physical appearance contributes to everyones sense of self-esteem. Clothing can be a form of selfexpression, so its important to consider the persons tastes and dislikes. To help the person with dressing: Simplify choices. Each morning, offer two choices of shirts and pants for the individual. Keep the closet free of excess clothing. Organize the process. Lay out clothing in the order it needs to be put on, or hand the person each piece while giving short, simple instructions. Dont rush the individual; it will only create anxiety. Be flexible. If the individual wants to wear the same outfit repeatedly, try getting a duplicate of the outfit or have similar options available. Choose comfortable and simple clothing. Cardigans or shirts that button in front are sometimes easier to work than pullover tops. Substitute Velcro for buttons, snaps or zippers that may be too difficult to handle. Make sure the individual has comfortable shoes that are not slippery. With all personal care activities, it is important to incorporate the individuals past routine whenever possible into the current one. As you assist the person, be patient and creative. An approach that worked one day may not work the next, so be flexible.
1.800.272.3900
www.alz.org
Incontinence
Many people with dementia have loss of bladder or bowel control (incontinence). Causes include inability to recognize natural urges, forgetting where the bathroom is or side effects from medicine. Have the doctor rule out medical problems as the cause. Causes of incontinence If a person with Alzheimers has recently started to lose control of his or her bladder and bowels, the first and most important step is to determine the possible causes. Consider the following: Medical conditions Urinary tract infection, constipation or a prostate problem. Diabetes, stroke or a muscular disorder such as Parkinsons disease. Physical disabilities that prevent the person from reaching the bathroom in time. Medications and diuretics Sleeping pills and anxiety-reducing drugs may relax the bladder muscles. Drinks such as cola, coffee and tea can act as diuretics; a diuretic increases urination. Environment and clothing Make sure the person can find the bathroom. Remove obstacles, such as furniture, in the path to the bathroom; make sure the path is well-lit. Provide clothes that are easy to remove. Dehydration Dont withhold fluids. This could cause dehydration, which could lead to a urinary tract infection and increased incontinence. Understand Bladder and bowel accidents are embarrassing. Find ways to help the person keep his or her dignity. For example say, Something spilled on you instead of saying, You wet yourself. Be matter-of-fact; dont scold or make the person feel guilty. Respect the need for privacy as much as possible. Communicate Encourage the person to tell you when he or she needs to use the toilet. Watch for nonverbal cues such as restlessness; making unusual sounds or faces; pacing; sudden silence; or hiding in corners. These cues indicate the need to use the toilet. Use adult words, not baby talk, to refer to using the toilet.
1.800.272.3900 | www.alz.org
Learn the persons trigger words or phrases for needing to use the toilet. The person may use words that have nothing to do with the bathroom (i.e., I cannot find the light), but to that person, it means going to the bathroom.
Make
it easy to find and use the toilet Keep the bathroom door open so the toilet is visible. Put a picture of a toilet on the bathroom door. Paint the bathroom door with a color in contrast to the wall. Make the toilet safe and easy to use. For example, raise the toilet seat, install grab bars on both sides of the toilet, and use nightlights to illuminate the bedroom and bath. Consider a portable commode or urinal for the bedroom. Remove plants, wastebaskets and other objects that could be mistaken for a toilet. Remove throw rugs that may cause a person to trip and fall.
Plan ahead Observe and recognize the persons routine toilet schedule. Remind him to use the bathroom just before his or her usual time. Try setting a regular schedule for toilet use. For example, help the person to the bathroom first thing in the morning, every two hours during the day, immediately after meals and just before bedtime. Identify when accidents occur, then plan for them. If they happen every two hours, get the person to the bathroom before that time. Follow up Check the toilet to see if the person has urinated and/or moved his or her bowels. Help the person wipe and flush the toilet. Regularly wash sensitive skin areas and apply powder or ointment. Monitor fluids Limit the persons intake of liquids before bedtime. Cut down on drinks that stimulate urination such as cola, coffee, tea and juice. Adjust and innovate Choose clothing that is easy to remove and to clean. Consider having the person wear padded undergarments or adult briefs. Give the person plenty of time in the bathroom to empty his or her bladder and bowels. Run water in the sink or give the person a drink to stimulate urination. Rubber sheets or incontinence pads on a persons bed may help keep fluid from soaking into the mattress.
The Alzheimers Association is the leading voluntary health organization in Alzheimer care, support and research. Updated October 2004
1.800.272.3900 | www.alz.org
Bathing
Bathing is often the most difficult personal care activity that caregivers face. Because it is such an intimate experience, people with dementia may perceive it as unpleasant or threatening. In turn, they may act in disruptive ways, like screaming, resisting or hitting. Such behavior often occurs because the person doesnt remember what bathing is for or doesnt have the patience to endure such unpleasant parts of the task like lack of modesty, being cold or other discomforts. Here are some tips to make bathing the person with dementia easier. Know the person's abilities Encourage the person to do as much as possible, but be ready to assist when needed. Assess his or her ability to: Find the bathroom. See clearly. Keep balance without fear of falling. Reach and stretch arms. Remember steps in the bathing process, follow cues or examples. Know how to use different products (soap, shampoo, washcloth, etc.). Sense water temperature. Prepare the bathroom in advance Gather bathing supplies such as towels, washcloths, shampoo and soap before you tell the person that its time to bathe. Make sure the room is warm. Use large beach towels or bath blankets that completely wrap around the person for privacy and warmth. Have a washcloth ready to cover the persons eyes to prevent stinging from water or shampoo. Make sure that soap and shampoo are easy to reach. Try using hotel-sized plastic containers of shampoo. Fill the tub and then assess the persons reaction to getting into the water. It may be better to fill the tub after the person is seated. Use only two or three inches of water. Try using a hand-held showerhead and make sure the spray isnt too intense. Monitor the water temperature. The person may not sense when the water is dangerously hot or may resist bathing if the water is too cool. Focus on the person, not the task Give the person choices. For example, ask if he or she would like to bathe now or in 15 minutes, or take a bath or a shower. Try saying Lets wash up instead of Lets take a bath. Be sure the person has a role in the steps of bathing. For example, have the person hold a washcloth, sponge or shampoo bottle.
1.800.272.3900 | www.alz.org
Be aware that the person may perceive bathing to be threatening. If the person resists bathing or acts out, distract him or her and try again later. Often praise the person for his or her efforts and cooperation. Always protect the persons dignity, privacy and comfort. Try to help the person feel less vulnerable by covering the person with a bath blanket while undressing. Cover or remove the mirrors if a reflection in the bathroom mirror leads the person to believe theres a stranger in the room. Have a familiar person of the same sex help, if possible. Be flexible. Allow the person to get into the tub or shower with clothes on. He or she may want to undress once clothes are wet. Pad the shower seat and other cold or uncomfortable surfaces with towels. Have activities ready in case the person becomes agitated. For example, play soothing music or sing together.
Adapt the bathing process Set a regular time of day for bathing. If the person usually bathes in the morning, it may confuse him or her to bathe at night. Use simple phrases to coach the person through each step of the bathing process, such as: Put your feet in the tub. Sit down. Here is the soap. Wash your arm. Use other cues to remind the person what to do such as the watch me technique. Put your hand over the persons hand, gently guiding the washing actions. Use a tub bench or bath chair that can adjust to different heights. The person can sit while showering if it is easier. Washing the persons hair may be the most difficult task. Use a washcloth to soap and rinse hair in the sink to reduce the amount of water on the persons face. Be sure the persons genital areas are washed, especially if incontinence is a problem. Be sure the person is washed between folds of skin and under the breasts. Simplify the process Sew pockets into washcloths to hold soap. Use an all-purpose gel to wash both hair and body. Use special soaps that dont need rinsing. Use a nylon net sponge; it takes less work to make suds. Consider bathing alternatives Wash one part of the body each day of the week. Consider shampooing hair at another time or on a different day. Sponge bath the person with a washcloth between showers or baths. Remember after-bath care Check for rashes and sores, especially if the person is incontinent or unable to move around. Seat the person while drying and putting on fresh clothes. Make sure the person is completely dry. Pat the person dry instead of rubbing. Use cotton swabs to dry between the toes.
1.800.272.3900 | www.alz.org
Make
Apply lotion to keep skin soft. Use cornstarch or talcum powder under the breasts and in the creases and folds of skin. If the person wont use deodorant, use baking soda. the bathroom safe Never leave the person alone in the bathroom. Lower the thermostat on your hot water heater to prevent scalding injuries. Always check the water temperature, even if the person draws his or her own bath. Always put a nonskid mat in the tub or shower. Install grab bars and use a seat in the tub or shower. Make sure there are no puddles on the bathroom floor; think about installing carpet.
1.800.272.3900 | www.alz.org
Dressing
Physical appearance contributes to a persons sense of self-esteem. For the person with dementia, choosing and putting on clothes can be frustrating. The person may not remember how to dress or may be overwhelmed with the choices or the task itself. There are many reasons why the person with Alzheimers might have difficulty dressing, including the following: Physical problems Does the person have problems with balance or with motor skills that are needed to fasten buttons or close zippers? Thinking problems Does the person remember how to dress? Does he or she recognize her clothes? Is he or she aware of the time of day or season of the year? Environment Is the person troubled by lack of privacy, a cold room, poor lighting or loud noises? Other concerns Are you rushing the person to get dressed quickly? Are you giving the person clear step-by-step instructions on how to dress or does the task seem too complicated? Is the person embarrassed by dressing in front of you or others? Once youve answered these questions, youll be in a better position to help the person get dressed. Simplify choices Lay out proper clothes for the person, including appropriate selections for warm and cool weather. If appropriate, give the person an opportunity to select favorite outfits or colors. Try offering just two choices of shirts or pants. Keep the closets free of excess clothing. A person may panic if clothing choices become overwhelming. Choose comfortable and simple clothing Choose comfortable and loose-fitting clothing thats easy to put on and remove. Cardigans, shirts and blouses that button in front are sometimes easier to work than pullover tops. Substitute Velcro for buttons, snaps and zippers, which may be too difficult to handle. To avoid tripping and falling, make sure that clothing length is appropriate.
1.800.272.3900 | www.alz.org
Make sure the person wears comfortable, non-slip shoes. If the person is confined to a wheelchair, adapt regular clothes to protect his or her privacy and allow for greater comfort. Make sure that clothing is loose fitting, especially at the waist and hips and choose fabrics that are soft and stretchable.
Organize the dressing process Lay out clothes in the order each item should be put on. Hand the person one item of clothing at a time while giving short, simple instructions such as Put on your shirt, rather than Get dressed. Dont rush the person. Haste can cause anxiety. Be flexible If the person wants to wear the same outfit repeatedly, try getting a duplicate of it or have similar options available. Its alright if the person wants to wear several layers of clothing, just make sure he or she doesnt get overheated. Offer praise, not criticism, if clothing is mismatched. The Alzheimers Association is the leading voluntary health organization in Alzheimer care, support and research. Updated October 2004
1.800.272.3900 | www.alz.org
Eating
Proper nutrition is important to keep the body strong and healthy. Regular nutritious meals may become a challenge for people with dementia. They may become overwhelmed with too many food choices, forget to eat or think they have already eaten. If the person is having difficulty eating, ask yourself the following questions to help you find answers: Physical difficulties Is the problem physical? Sores in the mouth, poor-fitting dentures, gum disease or dry mouth may make eating difficult. Disease Does the person have other chronic diseases? Intestinal or cardiac problems or diabetes might lead to loss of appetite. Constipation or depression can also decrease appetite. Agitation/distraction Is the person agitated or distracted? If agitated, the person probably wont sit long enough to eat an entire meal. Think about how you can reduce distractions in the eating area. Eating style Have you recently changed eating styles? Does the person have a preferred eating style? Some people who are not accustomed to sitting down at the table for three full meals may prefer to have several smaller meals or snacks. Environment Are there odors or harsh noises in the room that might distract the person from eating? Food quality Is the food appealing in appearance, smell and taste? Once youve evaluated the sources of eating problems, you can take action. Be flexible to the persons food preferences Remember that the person with dementia has long-standing personal preferences. Try to keep these likes and dislikes in mind when youre preparing food. Make mealtimes calm and comfortable Serve meals in quiet surroundings, away from the television and other distractions. Keep the table setting simple and avoid patterned plates, tablecloths and placemats that might confuse the person. Use white plates or bowls with a contrasting color placemat to help the person distinguish the plate from the table. You may also want to use plastic tablecloth, napkins or aprons to make cleanups easier. Use only the utensils needed for the meal. Serve only one or two foods at a time. For example, serve mashed potatoes followed by cooked meat. Use simple, easy-to-understand instructions. For example, Pick up your fork. Put some food on it. Raise it to your mouth.
1.800.272.3900 | www.alz.org
Check the food temperature. The person might not be able to tell if a food or beverage is too hot to eat or drink. Be patient. Dont criticize the persons eating habits or urge him or her to eat faster. Speak slowly and clearly. Be consistent and repeat instructions in the same words each time. Use distractions. If the person doesnt want to eat, take a break, involve him or her in another activity, and return to eating later. Give the person plenty of time to eat. Keep in mind that it can take a person an hour or more to finish eating. Give the person the opportunity to eat with other family members for as long as possible. Use memory aids to remind the person about meal times. You might try a clock with large numbers, an easy-to-read appointment calendar with large letters and numbers, or a chalk or bulletin board for recording the daily schedule.
Encourage independence Serve finger foods or serve the meal in the form of a sandwich. Serve food in large bowls instead of plates or use plates with rims or protective edges. Use spoons with large handles instead of forks. Set bowls and plates on a non-skid surface such as a cloth or towel. Use cups and mugs with lids to prevent spilling and fill glasses half full; use straws that bend. Gently place the persons hand on or near an eating utensil. Show the person how to eat by demonstrating eating behavior. Or, try hand-overhand feeding by putting a utensil in the persons hand, placing your own hand around, then you both lift your hands to the persons mouth for a bite. Minimize eating and nutrition problems Avoid foods such as nuts, popcorn and raw carrots, which may be hard to chew and swallow. Grind foods or cut them into bite-size pieces. Pureed and frozen foods can be stored in plastic bags for later use. Serve soft foods such as applesauce, cottage cheese and scrambled eggs. Serve thicker liquids such as shakes, nectars and thick juices, or serve a liquid along with the food. Encourage the person to sit up straight with his or her head slightly forward. If the persons head tilts backward, move it to a forward position. Use vitamin supplements only on the recommendation of a physician. Monitor their use. If the person has a decreased appetite, try preparing some of the persons favorite foods; increase the persons physical activity; or plan for several small meals rather than three large meals. After the meal is over, check the persons mouth to make sure that food is swallowed. Be alert for signs of choking. Learn the Heimlich maneuver in case of a choking incident.
1.800.272.3900 | www.alz.org
Keep in mind that the person may not remember when or if he or she ate. If the individual continues to ask about eating breakfast, you might consider serving several breakfasts juice, followed by toast, followed by cereal. Help the person maintain good oral hygiene. If its difficult to use a toothbrush, try oral swabs. Make regular visits to the persons dentist.
The Alzheimers Association is the leading voluntary health organization in Alzheimer care, support and research. Updated November 2005
1.800.272.3900 | www.alz.org
Oral health care for older adults with dementia

Why is oral health important for dementia patients?
Good oral health is necessary to prevent dental pain and infection, preserve personal hygiene and dignity, and thus improve quality of life. It is also necessary to reduce the risk of serious systemic health problems such as respiratory infection, poorly controlled diabetes and possibly cardiovascular disease, as well as for maintaining adequate nutrition and hydration. Good oral hygiene may also reduce the risk of developing aspiration pneumonia. Good oral hygiene can also help control diabetes. Patients with diabetes are more likely to have periodontal disease (gum disease) than healthier individuals. On the other hand, poorly controlled periodontal disease may also increase the risk of developing end-stage renal disease (chronic kidney disease) in patients with type 2 diabetes.
Is oral health a concern for older adults with dementia?

Yes. As the disease progresses, older adults with dementia will gradually lose their cognitive function and motor skills. Their ability to perform self-care and adequate oral hygiene will also decline and eventually be lost. As a result, oral hygiene in these individuals is usually poorer as compared to people without dementia, making these patients more likely to develop oral diseases. Medications used to treat dementia may also further increase the risk that demented patients will be exposed to oral diseases. Some drugs used to treat the symptoms of dementia may impair salivary output and cause dry mouth, a risk factor for many oral problems such as dental cavities, denture-related oral mucosal lesions, and swallowing difficulties. Other oral health issues, such as gum disease, soft tissue traumas and ulcers and denture-related problems, are also more common in older adults with dementia.
How to improve oral health for older adults with dementia?

As a caregiver, you can make a significant difference in maintaining oral health for your loved one. Here are some tips to help you deliver good oral hygiene care.
Brushing teeth
If the person you care for is able to perform oral hygiene care with help:
Develop a routine for oral hygiene care. Using the same technique at the same time in a familiar environment every day may help eliminate problem behavior, smooth the task of oral hygiene care and potentially help the person retain the capacity to perform oral hygiene care by for a longer period of time. Provide assistance. You may hand the toothbrush to the person or help him/her place toothpaste on the toothbrush to initiate the process. Demonstrate as needed. This is particularly helpful for the person with slight to moderate cognitive impairment. It may provide a hint for these individuals to help them initiate and execute the action. Make the toothbrush easier to hold. Buy a toothbrush with a large handle or simply use a rubber band to attach the brush to the hand of the person you care for. An electric toothbrush is another option. It might make brushing easier and more efficient. However, vibration and noise may cause problems for persons with cognitive impairment. Therefore, it is important to spend time in advance to explain to the person what the power brush will feel like.
Brushing teeth
If the person you care for is unable to perform oral hygiene care:
Place toothbrush, toothpaste, a glass of water or other oral rinse within easy reach. Wash your hands and put on disposable gloves. Use the Tell-Show-Do technique. Tell the person about each step before you do it. For instance, explain to the person you are going to brush his/her teeth and what it will feel like. You may slightly brush the persons hand to let him/her experience the feeling. Show how you are going to do each step before you do it. You may let the person touch and hold the toothbrush, which is helpful for developing a feeling of safety. Do the steps in the same way that you have explained them, while providing positive feedback to reinforce good behavior. Sit or stand behind the person you are helping. Make sure you have good light and can see all the surfaces of the teeth. Use a toothbrush with soft bristles. Gently brush all the remaining teeth with fluoridated toothpaste. Make sure you brush all the surfaces of each tooth. Gently brush the front portion of the tongue after brushing the teeth. Help the person rinse with plain water. Important tips for the person with severe swallowing disorders: do not use toothpaste. Brush teeth with salt water instead. After brushing the teeth, sweep the mouth with a finger wrapped in gauze. Ask your dentist for creative ways to use fluoride or another oral rinse. Other useful tips: try not to place your finger between the teeth of the person you are caring for to prevent being bitten. You may pull the cheek with the handle of a tea spoon wrapped in gauze to increase the field of vision.
Flossing
Floss daily, if possible. Flossing is important to help prevent dental decay and gum disease. Cleaning between teeth daily with floss helps remove decay-causing bacteria that can linger between teeth where a toothbrush cant reach. You may try using a floss holder or an inter-dental cleaner to ease the job and prevent being bitten by the person you care for.
Use fluoride and other dental prescriptions

Keep prescribed dental products or medications such as prescribed fluoridated toothpaste and antimicrobial oral rinses away from the person with cognitive impairment. Inappropriate use may lead to overmedication or toxicity. Do not leave the person you care for without supervision while using prescribed dental products or medications.
What can I do if the person I care for is not cooperative?

Dont be frustrated. Things like this sometimes happen. Here are some useful tips: Dont use force. Forcing an uncooperative person to receive oral hygiene care may cause unwanted consequences such as bleeding, soft tissue injury and so on. If the person refuses oral hygiene care, dont push the person because he/she also needs the feeling of control. Come back and try to do it later. At another time, the person may behave differently and make your task easier. Try the Tell-Show-Do technique.
Denture care
Rinse dentures after each meal Gently brush all surfaces of the denture with water and a soft-bristled brush at night. Be careful not to damage the plastic or bend attachments. After cleaning, place dentures in water. Important tip for nursing home residents with cognitive impairment: ask the dentist to place ID on the dentures to minimize the possibility of losing them.
Be patient. Give the person enough time to understand and adjust to your care. Letting the person touch, hold or play with the toothbrush may help the person feel safe and develop trust with you. Talk with the person while you are conducting oral hygiene care. This will help distract the person from distress. Letting the person hold items with soft texture can also help the person reduce stress and anxiety. Repeat your instructions with normal voice. Speak slowly, clearly, and in a lower voice tone. Use voice and body language to provide positive feedback and to reinforce good behavior. If none of the above techniques works, try to have somebody to rescue you. This person enters the situation and tells you to leave so that he/she can help provide oral hygiene for the person who is fighting with you.
When does the person you care for need to see a dentist?
Older adults with dementia should visit dentists regularly. Regular dental care is as important as brushing and flossing every day. It can help the person you care for maintain good oral health and prevent unnecessary pain or infection. In addition, if you see the following signs or symptoms, schedule a dental appointment for the person you care for: Multiple decayed or broken teeth Swollen, bleeding gum Yellow drainage coming out from gum tissue Multiple small ulcers on gum tissue, cheek, tongue or the roof of the mouth Single large ulcer unhealed for weeks
Generalized redness or ulcers under dentures Broken denture tooth or break on denture base Loose denture that requires denture adhesive to hold it in place Potential signs of dental pain or infection for non-verbal elder with dementia: swollen face, sinus on gum, yellow drainage coming out from gum tissue, together with unexplainable and sudden behavior changes, such as refusing to eat, refusing to drink, refusing to brush teeth, pulling at face, chewing lips, depression or aggression
What should you do before a dental appointment?

Some patients need to take antibiotics one hour before a dental appointment. If you are instructed to do so, help the person you care for take the medication before you go to the dentist. Bring a complete medical history, including allergy information, and a list of medications. Be familiar with the persons dental history and help the dentist understand the persons oral health concern. Some individuals with cognitive impairment may be anxious in unfamiliar environments. If this is the case, be prepared to help the dental team comfort the person you care for.
References 1. 2. 3. Dental Care Every Day: A Caregivers Guide. Developmental Disabilities: Practical Oral Care Series. National Institute of Dental and Craniofacial Research Shultis WA, Weil EJ, Looker HC, et al. Effect of periodontitis on overt nephropathy and endstage renal disease in type 2 diabetes. Diabetes Care 2007;30:306-11 Chalmers J, Johnson V, Tang JH, Titler MG. Evidence-based protocol: oral hygiene care for functionally dependent and cognitively impaired older adults. J Gerontol Nurs. 2004 Nov;30(11):5-12. Chalmers JM, Carter KD, Spencer AJ. Oral diseases and conditions in community-living older adults with and without dementia. Spec Care Dentist 2003;23: 7-17.
4.
Note: Some techniques introduced in this guide were adopted from Dental Care Every Day: A Caregivers Guide with modification. Xi Chen, DDS, PhD Assistant Professor Department of Dental Ecology UNC School of Dentistry C.B. # 7450, Chapel Hill, NC 27599-7450 Office: 919-966-8522 Clinic: 919-966-2115 Fax: 919-843-1170
Hospitalization
Staying at a hospital can make anyone feel anxious and upset. The experience can be especially traumatic for a person with Alzheimers disease or another dementia. The change from home to an unfamiliar environment and the added stress caused by other medical treatments and possibly pain are likely to make the person more confused and disoriented than usual. Knowing what to expect can help you understand these changes. Planning ahead can make hospitalization less difficult for everyone. Causes of hospitalization Many people with Alzheimers also have serious medical conditions, such as heart disease or a hip fracture, and need hospital care because of these conditions. Others need hospital care because of symptoms related to Alzheimers disease. Even if the hospitalization is for a medical condition, the person with Alzheimers will affect many parts of the process. Make sure doctors, nurses and others who care for the person know about his or her dementia. Expected and unexpected hospitalizations Some hospitalizations are expected, and others are unexpected. If there is a medical emergency, it may be necessary to take the person to the emergency room where he or she may be treated and sent home or admitted to the hospital. In any case, it helps to be prepared. Avoiding unnecessary hospitalizations Ask the doctor if the procedure, test or treatment can be done in an outpatient clinic. Ask the doctor how long the person will be in the hospital. Find out if tests can be done before admission to shorten the hospital stay. Find out if the doctor plans to consult with other physicians. If so, ask if consulting physicians can see the person before he or she is admitted. Preparing for an expected hospitalization Ask questions. Be sure you understand: the persons diagnosis, the name of the procedure, the risks and benefits, expected results, and expected length of recovery. Talk with the doctor about how the procedure and hospital stay are likely to affect the persons thinking and behavior. If anesthesia will be used, ask how it will affect the persons level of confusion. Ask about the use of physical or chemical restraints. Restraints are intended to protect the safety of a person, but can cause physical harm and jeopardize independence and dignity. Try to get a private room. Privacy may help calm the person. Have a family meeting or conference call to discuss responsibilities. For example, who will take the person for preadmission testing and who will stay at the hospital during surgery. Alternate visiting hours to share caregiving.
1.800.272.3900 | www.alz.org
Making hospital admission as easy as possible for the person If the person is capable of understanding and handling stress, talk to him or her about the hospital admission. Involve the person in discussions and decision-making as much as possible. Consider recording the persons wishes about life-sustaining treatments, brain donation, etc. Prepare the person for the hospital visit. Just before leaving the house, explain that the two of you are going to spend a short time in the hospital. Keep explanations simple. If the person resists, put the visit in a positive light. Tell him or her that you and the doctor need his or her help to solve a problem. Make person feel comfortable away from home. Bring a photograph, favorite blanket or security object. Preparing for an unexpected emergency room visit or hospitalization Be prepared for an emergency room visit or unexpected hospital stay by creating an emergency kit in advance. Some items to include: o a list of current medications and food allergies o copies of advance directives o insurance information o name and phone number of physician o name and phone number of friends or family members who could stay with the person in the emergency room while you are filling out forms o a note explaining the persons dementia and particular needs o nonperishable snacks o change of clothes o extra disposable briefs if they are usually worn o pen and paper to write down symptoms and doctors or nurses instructions Be patient. There could be a long wait in the emergency room. Help emergency room staff communicate with and understand the person. Comfort and reassurance the person. Making the person as comfortable as possible in the hospital Remain with the person as much as possible. Try to be in the room when the person wakes in the morning, when medications are given, catheters are inserted, or when the doctor stops by. Communicate with the person when you cannot be there. For example, if the person can read, leave a note that says: Mom, you fell down and broke your leg. Please rest quietly. Telephone often or leave a tape recording of familiar sounds and voices. If possible, hire someone to be with the person 24 hours a day or when you cannot be there. Working with hospital staff Be sure that hospital staff who interacts with the person knows that he or she has Alzheimers disease or another dementia. If the person is more confused in the hospital than at home, let the staff know that too. Provide information about his or her personal habits, diet or eating preferences, and any medications that he or she is taking.
1.800.272.3900 | www.alz.org
Type up a list of tips for hospital staff, such as, Dont leave him alone with the television on. It confuses him, or Take her to the bathroom every two or three hours, or she will be incontinent. Make sure that all information you provide to hospital staff about the person is also included in his or her medical chart. Alert the staff if the person wanders. See that they take measures to ensure his or her safety. Make sure the person wears an identification bracelet, such as the one available through MedicAlert +Alzheimers Associations Safe Return.
Developing a post-hospital plan Work with healthcare providers to plan for long-term care or the persons return home. Ask these questions: o Will the person tire more easily as a result of surgery? o What activities the person will need extra help with? o How long it will be before the person can resume normal activities? o How long the person must wait before doing exercise, such as walking? o How long the person will be in pain and what can be done to ease it? Ask for an in-home nurse or other assistant. A social worker or care planner can help make arrangements that are within your means. Make sure you understand what must be done after hospitalization, including: o Medications dosages, scheduling, side effects and when they can be stopped o Therapy o Special procedures such as bandaging, elevating body parts, fluid intake and urination, monitoring bruises and swelling o Signs of emergency and who to call o A schedule of follow-up visits to the doctor Ask for help from family or friends.
Resources MedicAlert + Safe Return is a 24-hour nationwide emergency response service for individuals with Alzheimers or related dementia that wander or who have a medical emergency. To learn more or to obtain a registration form, contact your local Alzheimers Association, call 1.888.572.8566 or register online at www.alz.org. The Alzheimers Association is the leading voluntary health organization in Alzheimer care, support and research. Updated November 2007
1.800.272.3900 | www.alz.org
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
7.SelfCare

10WaystobeaHealthyCaregiver 10SymptomsofCaregiverStress AlzheimersDisease:ImpactontheCarePartner Grief,MourningandGuilt
Summary: Caregivingisastressfuldedication.Thissectionprovidesinformationonhowyoucan bettertakecareofyourself. Thissectionwillanswer:

Whatdoyouneedtoremembertotakecareofyourself? Whataresomesymptomsofcaregiverstress? Whataresomesignsofgriefandguilt,andwhataresomewaystodealwith thoseemotions?
Taking Care of Yourself: Managing Stress as a Caregiver
10 Ways to be a Healthy Caregiver

1. Understand whats going on as early as possible Symptoms of Alzheimers may appear gradually. It can be easy to explain away unusual behavior when a loved one seems physically healthy. Instead, consult a doctor when you see changes in memory, mood or behavior. Dont delay; some symptoms are treatable. 2. Know what community resources are available Contact your local Alzheimers Association. They can help you find Alzheimer care resources in your community. Adult day care, in-home assistance, visiting nurses and Meals-on-Wheels are just some of the services that can help. 3. Become an educated caregiver As the disease progresses, new caregiving skills are necessary. The Alzheimers Association can help you better understand and cope with the behaviors and personality changes that often accompany Alzheimers. 4. Get help Trying to do everything by yourself will leave you exhausted. Seek the support of family, friends and community resources. Tell others exactly what they can do to help. The Alzheimers Association 24/7 Helpline and local support groups are good sources of comfort and reassurance. If stress becomes overwhelming, seek professional help. 5. Take care of yourself Watch your diet, exercise and get plenty of rest. Making sure that you stay healthy will help you be a better caregiver and more able to manage your own stress levels. 6. Manage your level of stress Stress can cause physical problems (blurred vision, stomach irritation, high blood pressure) and changes in behavior (irritability, lack of concentration, changes in appetite). Note your symptoms. Use relaxation techniques that work for you, and talk to your doctor. 7. Accept Changes as they occur People with Alzheimers change and so do their needs. They may require care beyond what you can provide on your own. A thorough investigation of community resources from home care services to residential care should make transition easier; so will the support and assistance of those around you. 8. Make legal and financial plans Plan ahead. Consult a lawyer to discuss legal and financial issues including advance directives, wills, estate planning, housing issues and long-term health insurance. Involve the person with Alzheimers and other family members whenever possible. 9. Give yourself credit, not guilt Know that the care you provide does make a difference and you are doing the best you can. You may feel guilty because you cant do more, but individual care needs change as Alzheimers progresses. You cant promise how care will be delivered, but you are making sure that the person with Alzheimers is well cared for and safe. 10. Visit your doctor regularly Take time to get regular checkups, and be aware of what your body is telling you. Pay attention to any exhaustion, stress, sleeplessness or changes in appetite or behavior. Ignoring symptoms can cause your physical and mental health to decline.
1.800.272.3900
www.alz.org
Taking Care of Yourself: Managing Stress as a Caregiver
10 Symptoms of Caregiver Stress

If you experience some of these signs of stress on a regular basis, make time to talk to your doctor. 1. Denial about the disease and its effect on the person whos been diagnoses I know Mom is going to get better. 2. Anger at the person with Alzheimers or others, anger that no cure exists or anger that people dont understand whats going on If he asks me that question one more time Ill scream! 3. Social withdrawal from friends and activities that once brought pleasure I dont care about getting together with the neighbors anymore. 4. Anxiety about facing another day and what the future holds What happens when he needs more care than I can provide? 5. Depression that begins to break your spirit and affects your ability to cope I dont care anymore. 6. Exhaustion that makes it nearly impossible to complete necessary daily tasks Im too tired for this. 7. Sleeplessness caused by a never-ending list of concerns What if she wanders out of the house or falls and hurts herself? 8. Irritability that leads to moodiness and triggers negative responses and actions Leave me alone! 9. Lack of concentration that makes it difficult to perform familiar task I was so busy, I forgot we had an appointment. 10. Health problems that begin to take their toll, both mentally and physically I cant remember the last time I felt good.
1.800.272.3900
www.alz.org
Grief, Mourning and Guilt

Its normal to feel loss when you care about someone who has Alzheimers disease. Its also normal to feel guilty, abandoned and angry. Youre entitled to these emotions and may start to experience them as soon as you learn of the diagnosis. Alzheimers gradually takes away the person you know and love. As this happens, youll mourn him or her and experience the phases of grieving: denial, anger, guilt, sadness and acceptance. The stages of grief dont happen neatly in order. Youll move in and out of different stages as time goes on. Some common experiences in the grieving process include: Denial Anger Guilt
Hoping that the person is not ill. Expecting the person to get better. Convincing yourself that the person hasnt changed. Attempting to normalize problematic behaviors.
Being frustrated with the person. Resenting the demands of caregiving. Resenting family members who cannot or will not help provide care. Feeling abandoned and resenting it.
Wondering if you did something to cause the illness. Regretting your actions after the diagnosis. Feeling bad because youre still able to enjoy life. Feeling that youve failed. For example, when you cant care for your loved one at home. Having negative thoughts about the person or wishing that he or she would go away or die. Regretting things about your relationship before the diagnosis. Having unrealistic expectations of yourself, with thoughts such as: I should have done... I must do everything for him or her. I must visit him or her every day.
Sadness Feeling despair or depression. Withdrawing from social activities. Withholding your emotions. Acceptance Finding personal meaning in caring for someone who is terminally ill. Seeing how the grieving process affects your life. Appreciating the personal growth that comes from surviving loss.
1.800.272.3900 | www.alz.org
Face your feelings Think about all of your feelings positive as well as negative. Let yourself be as sad as you want. Accept feelings of guilt; theyre perfectly normal. Work through your anger and frustration. These are healthy emotions. Prepare to experience feelings of loss over and over as the person with dementia changes. Take ownership of your feelings, so you can start healing. Claim the grieving process as your own. No two people experience grief the same way. Grief hits different people at different times; some people need more time to grieve than others. Your experience will depend on the severity and duration of the persons illness, on your own history of loss, and on the nature of your relationship with the person who has Alzheimers. Know that it is common to feel conflicting emotions. Its OK to feel love and anger at the same time. Consider writing in a journal as a way to help you express your feelings. Accept yourself Think about what you expect from yourself. Is it realistic? Ask yourself: What do guilty feelings accomplish for me? What do they accomplish for my loved one? Accept things that are beyond your control. Make responsible decisions about the things you can control. Complete any unfinished emotional business with others. Think about the fond memories you share with the person. Try to feel that you deserve good things. As time permits, get involved in activities that you enjoy. Turn to spiritual beliefs, if you choose, for consolation. Get support Talk with someone you trust about your grief, guilt and anger. If you want to meet with a therapist, interview several so you can choose one youre comfortable with. Connect with other caregivers, family members and friends impacted by Alzheimers. Combat feelings of isolation and loneliness. Join a support group offered by your local Alzheimers Association. When you talk with other caregivers, share your emotions. Cry and laugh together. Dont limit conversations to caregiving tips. Know that some people may not understand your grief. Most people think grief happens when someone dies. They may not know that its possible to grieve deeply for someone who is fading away.
1.800.272.3900 | www.alz.org
Take care of yourself Switching from concentrating all your efforts on caring for the person to caring for yourself can be difficult. The best thing you can do for the person with Alzheimers disease is to stay healthy by caring for your physical, mental and emotional well-being. Ask others for emotional support. Ask others for help. Be specific, such as asking friends or family to stay with your loved one why you take a break from caregiving. Or, ask others to run errands or do tasks, such as grocery shopping or mowing the lawn. Create balance in your life. Do things that bring you joy and comfort. Give yourself time to rest. Youll be less vulnerable to illness. Listen to relaxation tapes or soothing music, take a walk, or try deep breathing exercises to help relieve stress. Let yourself enjoy humorous moments. Dream about the future. As you grieve, new dreams will begin to replace old ones.
1.800.272.3900 | www.alz.org
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
8.Financing
HelpingthePersonWithDementiaSettleFinancialIssues FinancialResources
Summary: Caringforapersonwithdementiacanbeexpensive.Thissectionprovidesan overviewoftheavailableresourcesthatexisttohelpcaregivers.Alsoincludedis informationaboutgatheringfinancialandlegaldocuments,thecostsyoumayfaceas acaregiver,andinformationabouthowtocoverthesecosts.
Whatfinancialandlegalinformationisimportantformetogather? WhatkindsofcostsmightIfaceasacaregiver? Whatfinancialresourcesareavailabletome?

Helping the Person with Dementia Settle Financial Issues
Money Matters The cost of providing long-term care for a person with dementia can be very expensive. Many people assume that government programs, such as Medicare and others will pay for it. However, individuals and families typically pay for services out of their own pocket. Advance planning can help reduce the financial stress that can come from paying for care. I. Gather financial and legal documents Carefully go over financial and legal documents. Getting a handle on existing expenses, assets and income can help you identify any necessary documents that are not in place. Gather documents such as: Wills Medical and durable powers of attorney Bank and brokerage accounts Deeds, mortgage papers or ownership statements Pension and other retirements benefit summaries Social Security payment information Stock and bond certificates Monthly or outstanding bills Insurance policies II. Costs you may face Alzheimers is a progressive disease, and the type and level of care a person needs will change over time. Consider all the costs you might face now and in the future. Ongoing medical treatment, including diagnosis and follow-up visits Treatment for other medical conditions Prescription drugs Personal care supplies Adult day services In-home care services Residential care services, including assisted living and nursing homes The person with dementia may not have all the money he or she will need to pay for care. Caregivers need to review their own resources and decide if they can provide financial assistance and how much. Review savings, investments and insurance plans. Assess the need to increase life insurance or disability insurance. Consider what plans need to be in place in case something happens. Caregivers may want to consider if long-term care insurance is right for them. This type of insurance could cover the costs for most care settings, including nursing home, private home, assisted living or adult day center. If the person with dementia is dependent under the tax rules, caregivers may be able to use their own workplace flexible spending account to cover the persons medical costs or dependent care expenses. Talk with other family members about pooling resources together to pay for care.
1.800.272.3900
www.alz.org
Helping the Person with Dementia Settle Financial Issues
III. Ways to cover the costs of care A number of financial resources may be available to help cover the costs care: A. Insurance includes government insurance programs such as Medicare and Medigap; disability insurance from an employer-paid plan or personal policy; group employee plan or retiree medical coverage; life insurance and long-term care insurance. After symptoms of Alzheimers appear, it is usually no longer possible to purchase many types of insurance. Medicare is a federal health insurance program for people age 65 or older. Medicare covers inpatient hospital care, some doctors fees, some medical items and outpatient prescription drugs. The program also provides some home health care, including skilled nursing care and rehabilitation therapy, under certain conditions. It does not pay for long-term nursing home care. Medigap insurance fills gaps in Medicare coverage, such as paying for coinsurance. The more expensive Medigap policies may cover additional items. Disability insurance provides income for a worker who can no longer work due to illness or injury. An employer-paid disability policy provides 60 to 70 percent of a person's gross income. Long-term care insurance typically pays for the costs of most care settings, include nursing homes. If the person with dementia has a long-term care policy, carefully review it to see if Alzheimer's disease is covered, when can benefits start being collected and what kind of care the policy covers. Life insurance can be a valuable source of cash. The person with dementia may be able to receive a part of the policy's face value as a loan, called a viatical loan, that is paid off upon the person's death. B. Retirement benefits includes individual retirement accounts (IRAs), employee-funded retirement plans, such as a 401(k), 403(b) and Keough. C. Personal savings and assets includes stocks, bonds, savings accounts, real estate and personal property, such as jewelry or artwork. D. Government assistance includes Social Security Disability Income (SSDI) for workers under age 65; Supplemental Security Income (SSI); Medicaid; veterans benefits; and tax deductions and credits, such as the Household and Dependent Care Credit. Social Security Disability Income is for workers younger than 65 who qualify for benefits. To qualify, the person must meet the Social Security Administration's definition of disability. Generally that means proving that the person with dementia is unable to work in any occupation and the condition will last at least a year or is expected to result in death. Supplemental Security Income guarantees a minimum monthly income for people who are age 65 or older, are disabled or blind, and have very limited income and assets. To qualify for benefits, the person must meet the Social Security Administration's definition of disability. Medicaid pays for medical care for people with very low income and assets levels. It also pays for long-term care for people who have used up most of their own money, under most circumstances. The person with dementia should be very careful about giving away assets to family members to qualify for Medicaid. Strict laws govern this area. E. Community support includes local support services at low or no cost, such as respite care, support groups, transportation and meal delivery.
1.800.272.3900
www.alz.org
Financial Resources
Social Security Disability Income (SSDI) A worker who is younger than age 65 may qualify for Social Security disability payments. To qualify for SSDI, the person must meet the Social Security Administrations definition of disability. Meeting the definition of disability generally means proving that: The person with dementia is unable to work in any occupation. The condition will last at least a year or is expected to result in death. Family members also may be eligible to receive SSDI benefits. After receiving SSDI benefits for at least 24 months, the person with dementia will qualify for Medicare benefits. Supplemental Security Income (SSI) SSI guarantees a minimum monthly income for people who: Are age 65 or older, Are disabled or blind, and Have very limited income and assetsthese asset and income levels vary from state to state To qualify for SSI benefits, the person with dementia must meet the Social Security Administrations definition of disability stated above. Learn more about SSDI and SSI Call 1-800-772-1213 Visit www.ssa.gov
Medicaid Medicaid is a program jointly funded by federal and state governments. It is administered by each state. Medicaid pays for: Medical care for people with very low income and asset levels. Long-term care for people who have used up most of their own money, under most circumstances Most Medicaid dollars go toward nursing home care, but most states have home and community care options for some people who qualify for nursing home care. In most states, Medicaid will pay for hospice care. If the person with dementia is eligible for SSI he or she usually is automatically eligible for Medicaid. Learn more about Medicaid Call your states Medicaid telephone number, which may be listed in the blue (government) pages of the telephone directory. North Carolina: 1-800-662-7030 Visit www.cms.hhs.gov/home/medicaid.asp
1.800.272.3900
www.alz.org
Veterans benefits Veterans may qualify for government benefits, including health and long-term care. These benefits often change, so call a Veterans Affairs benefits counselor or visit the VA Web site for the latest information. Learn more about veterans benefits Contact the Department of Veterans Affairs: Call 1-877-222-8387 for health care benefits Call 1-800-827-1000 for general benefits Visit www.va.gov
Tax benefits Some financial benefits are available for the caregiver from the Internal Revenue Service (IRS): Income tax deductions Income tax credits The person with dementia is likely considered your dependent for tax purposes. If so, you may be allowed to itemize his or her medical costs. Keep careful records of all medical expenses. You may be entitled to the Household and Dependent Care Credit if you need to pay someone to care for the person so you can work. This credit can be subtracted directly from the tax shown on your return. Learn more about tax issues Internal Revenue Service (IRS): Call 1-800-829-1040 Visit www.irs.gov
1.800.272.3900
www.alz.org
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
9.Resources:HelpISAvailable

AlzheimersAssociation:ChapterNetwork AlzheimersAssociation24/7Helpline AreaAgenciesonAging CommunityResourcesInternetLinks YourLocalOrganizations
Summary: Thissectionprovidesanoverviewofavailableresourcestohelpyouprovidebetter careandgetsupportforyourselfandyourfamily.YourlocalAreaAgencyonAging (AAA)canhelpyoufindadditionalresourcesinyourcommunitylikeseniorcenters andsupportgroups.Yourprimarycarephysiciancanalsodirectyoutoadditional resourcesinyourarea. Thissectionalsoprovidesaplacewhereyoucanlistthenamesandcontact informationoflocalorganizationsthatcanhelpyouandyourfamily. Thissectionwillanswer:

WherecanIgethelpformyselfandthepersonwithdementia?

Alzheimer's Association 24/7 Helpline

When you have questions about Alzheimers disease, caregiving or brain health, the Alzheimers Association 24/7 Helpline has the answers. Staffed around-the-clock by professionals who understand the disease and its impact, our 24/7 Helpline connects callers to information and support whenever they need it. Our toll-free number is 1.800.272.3900. Professional and compassionate staff offers: Confidential care consultation from professional clinicians who can help with decision-making support, crisis assistance and education on issues families face every day. Referrals to local community programs, services and ongoing support. Assistance in a callers preferred language. We can respond to inquiries in 140 languages using our bilingual staff and a language translation service. The knowledge to address a variety of topics: Memory loss, dementia and Alzheimers disease Medication and treatment options Safety issues and services, including enrollment in MedicAlert + Alzheimers Association Safe Return Skills needed to provide quality care and to find the best care from health care professionals Strategies to reduce caregiving stress Legal, financial and housing options Alzheimer research in the news Brain health information A model of collaboration The 24/7 Helpline is a partnership between the Alzheimers Association national office and participating local Alzheimers Association chapters across the country. Callers are linked directly to trained staff in participating local chapters during their regular office hours. During evening and weekend hours, national office helpline staff responds to callers. This shared response assures 24/7 nationwide service while providing local personalized response and follow up. Staff at our national office and in our chapters complete rigorous training that enable us to provide consistent service and information to callers. An Internet-based knowledge bank helps staff respond quickly and accurately to calls. Dedicated to quality service We regularly monitor and analyze service levels to improve staff performance and implement change in procedures. We conduct semi-annual caller surveys to measure caller satisfaction and identify needs for new publications and services.
1.800.272.3900 | www.alz.org
The Alzheimers Association 24/7 Helpline is supported by a grant from the Administration on Aging (AoA), part of the U.S. Department of Health and Human Services. The Alzheimers Association is the leading voluntary health organization in Alzheimer care, support and research. Updated November 2007
1.800.272.3900 | www.alz.org
Area Agencies on Aging (AAA)

Statewide Resource NC Division of Aging and Adult Services Family Caregiver Support Program 2101 Mail Service Center Raleigh, NC 27699 (919) 733-3983 http://www.ncdhhs.gov/aging
REGION A (Cherokee, Clay, Graham, Haywood, Jackson, Macon, Swain)
Southwestern Commission AAA 125 Bonnie Lane Sylva, NC 28779 (828) 586-1962 FAX (828) 586-1968 http://www.regiona.org/aging Family Caregiver Support Coordinator: Cindy Miles Land-of-Sky Regional Council AAA 339 New Leicester Highway, Suite 140 Asheville, NC 28806 (828) 251-6622 FAX (828) 251-6353 http://www.landofsky.org/aging.html Family Caregiver Resource Specialist: Carol McLimans Isothermal Planning & Development Commission AAA 111 West Court Street Rutherfordton, NC 28139 (828) 287-2281 FAX (828) 287-2735 http://www.regionc.org/AAA Family Caregiver Resource Specialist: Michelle Templin High Country Council of Governments AAA 719A Greenway Road Boone, NC 28607 (828) 265-5434 FAX (828) 265-5439 http://www.regiond.org/aging.html Family Caregiver Support Specialist: Brenda Reece
REGION B (Buncombe, Henderson, Madison, Transylvania)
REGION C (Cleveland, McDowell, Polk, Rutherford)
REGION D (Alleghany, Ashe, Avery, Mitchell, Watauga, Wilkes, Yancey)
Information current as of November 2009
REGION E (Alexander, Burke, Caldwell, Catawba)
Western Piedmont Council of Governments AAA 736 4th Street SW Hickory, NC 28602 (828) 322-9191 FAX (828) 322-5991 http://www.wpcogaaa.org/ Family Caregiver Specialist: Mary Mitchell Centralina AAA 1300 Baxter Street, Suite 450 Charlotte, NC 28204 (704) 372-2416 (800) 508-5777 FAX (704) 347-4710 http://www.centralinaaging.org/ Family Caregiver/Aging Specialist: Dawn Oakley Gartman Piedmont Triad Council of Governments AAA Wilmington Building 2216 W. Meadowview Road, Suite 201 Greensboro, NC 27407-3480 (336) 294-4950 FAX (336) 632-0457 http://www.ptcog.org/aaa Northwest Piedmont Council of Governments AAA 400 W Fourth Street, Suite 400 Winston-Salem, NC 27101 (336) 761-2111 FAX (336) 761-2112 TDD (336) 761-2110 http://www.nwpcog.org/aaa Family Caregiver Support Specialist: Holli Ward Triangle J AAA 4307 Emperor Boulevard, Suite 110 Durham, NC 27703 (919) 549-0551 FAX (919) 549-9390 http://www.tjaaa.org Family Caregiver Resource Specialist: Ellison Jones Kerr Tar Regional Council of Governments AAA 1724 Graham Avenue Henderson, NC 27536 (252) 436-2040 (866) 506-6223 FAX (252) 436-2055 http://www.kerrtarcog.org/aging/ Family Caregiver Specialist: Melissa Jones
REGION F (Anson, Cabarrus, Gaston, Iredell, Lincoln, Mecklenburg, Rowan, Stanly, Union)
REGION G (Alamance, Caswell, Davidson, Guilford, Montgomery, Randolph, Rockingham)
REGION I (Davie, Forsyth, Stokes, Surry, Yadkin)
REGION J (Chatham, Durham, Johnston, Lee, Moore, Orange, Wake)
REGION K (Franklin, Granville, Person, Vance, Warren)
REGION L (Edgecombe, Halifax, Nash, Northampton, Wilson)
Upper Coastal Plain Council of Governments 121 W. Nash Street PO Box 9 Wilson, NC 27894 (252) 234-5952 FAX (252) 234-5971 http://www.ucpcog.org Family Caregiver Resource Specialist: Kim Emory Mid-Carolina Council of Governments AAA 130 Gillespie Street, 3rd Floor Fayetteville, NC 28301 (910) 323-4191 FAX (910) 323-9330 http://www.mccog.org/aging.asp Family Caregiver Specialist: Barbara White Lumber River Council of Governments AAA 30 CJ Walker Road Pembroke, NC 28372 (910) 618-5533 FAX (910) 521-7556 http://www.lrcog.dst.nc.us/aging Family Caregiver Resource Specialist: Anne Oglesby Cape Fear Council of Governments AAA 1480 Harbour Drive Wilmington, NC 28401 (910) 395-4553 (800) 218-6575 FAX (910) 395-2684 http://www.capefearcog.org/aaa_main.html Family Caregiver Resource Specialist: Holly Henderson Eastern Carolina Council of Governments 233 Middle Street, 3rd Floor OMarks Building New Bern, NC 28560 (252) 638-3185 (800) 824-4648 FAX (252) 638-3187 http://www.eccog.org/ Family Caregiver Specialist: Mineko Holloway
REGION M (Cumberland, Harnett, Sampson)
REGION N (Bladen, Hoke, Richmond, Robeson, Scotland)
REGION O (Brunswick, Columbus, New Hanover, Pender)
REGION P (Carteret, Craven, Duplin, Greene, Jones, Lenoir, Onslow, Pamlico, Wayne)
REGION Q (Beaufort, Bertie, Hertford, Martin, Pitt)
Mid-East Commission AAA 1385 John Small Avenue Washington, NC 27889 (252) 974-1839 FAX (252) 974-1852 http://www.mecaaa.org Family Resource Specialist: Sallie Williamson Albemarle Commission AAA 512 South Church Street Hertford, NC 27944 (252) 426-5753 FAX (252) 426-8482 http://www.albemarlecommissionaaa.com Family Caregiver Specialist: Catherine Smith
REGION R (Camden, Chowan, Currituck, Dare, Gates, Hyde, Pasquotank, Perquimans, Tyrrell, Washington)
Community Resources Internet Links

North Carolina Division of Aging and Adult Services In-Home Aide Services Alzheimer's Association Alzheimers Disease Education and Referral Center Alzheimer's Support Program Assisted Living, Nursing Home Referral Information for Caregivers NC CareLink Caregiver Assistance Adult Day Care Programs Eldercare Locator Family Caregiver Support Program Health Departments by County Adult Care Homes & Homes for the Aged Home Improvement Housing & Home Improvements http://www.ncdhhs.gov/aging/service.htm
http://www.dhhs.state.nc.us/aging/services/inhome.htm http://www.alz.org http://www.nia.nih.gov/Alzheimers/
http://www.dhhs.state.nc.us/aging/ad/NCAlzheimer.htm
http://www.aplaceformom.com
http://aarp.org/family/caregiving https://www.nccarelink.gov/ http://www.fullcirclecare.org/index.shtml http://www.dhhs.state.nc.us/aging/adcadh.htm http://www.eldercarelocator.org http://www.ncdhhs.gov/aging/fchome.htm
http://www.ncalhd.org/county.htm
http://www.ncdhhs.gov/dhsr/acls/faclistings.html
http://www.ncdhhs.gov/aging/homeimprovement/homeimprovement.htm http://www.ncdhhs.gov/aging/services/himprove.htm
Information Assistance Legal Services for Older Adults Meal Assistance
http://www.ncdhhs.gov/aging/services/iassist.htm http://www.ncdhhs.gov/aging/services/legsvc.htm
www.angelfoodministries.com Note: There is no limit to the number of units or bonus foods an individual can receive,
and there are no applications to complete or qualifications to which participants must adhere. Angel Food Ministries also participates in the U.S. Food Stamp program, using the Off-Line Food Stamp Voucher system.
Home Delivered Meals Congregate Nutrition Meals (Meals provided in a group setting) MedicAlert + Safe Return Medication Assistance in NC by County Medication Management ChecKmeds NC
http://www.ncdhhs.gov/aging/services/hdm.htm http://www.dhhs.state.nc.us/aging/services/cmeals.htm
http://www.alz.org/safetycenter/we_can_help_safety_medicalert_safereturn.asp https://www.nccarelink.gov/
http://www.ncdhhs.gov/aging/services/mmanage.htm http://www.checkmedsnc.com/ If you are 65 years of age or older, live in North Carolina and take part in a Medicare Prescription Drug Plan, you can get this free service. http://www.ncdhhs.gov/aging/services/respite.htm http://www.ncdhhs.gov/aging/scenters/sccty.htm http://www.nccrimecontrol.org/Index2.cfm?a=000003,000005,000081,001670 Brochure about the Silver Alert Program: http://www.nccrimecontrol.org/div/ale/missingpersons/SilverAlertBrochure3c.pdf
Respite Services Senior Centers by County The Silver Alert Program

To quickly locate missing persons who may be endangered.
Directory of North Carolina County Departments of Social Services Transportation Services
http://www.dhhs.state.nc.us/dss/local/docs/directory.pdf
http://www.ncdhhs.gov/aging/services/gtransp.htm
Transportation Services for Older Adults: Veterans Express North Carolina Weatherization Assistance Program
http://www.ncdhhs.gov/aging/services/mtransp.htm
http://www.veterans-express.com/index.html http://www.ncdhhs.gov/oeo/WAP/weather.htm The Weatherization Assistance Program is designed to help low-income citizens save energy and reduce expenses through the installation of energy conservation materials, the implementation of energy efficiency measures in their homes and energy education.
Your Local Organizations

Organization: ____________________________________ Contact: ______________________ Address: __________________________________________________________________
Phone/E-mail: __________________________________________________________________ What they do: __________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ Organization: ____________________________________ Contact: ______________________ Address: __________________________________________________________________
Phone/E-mail: __________________________________________________________________ What they do: __________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________
Organization: ____________________________________ Contact: ______________________ Address: __________________________________________________________________
Phone/E-mail: __________________________________________________________________ What they do: __________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________ ______________________________________________________________________________
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
10.PersonalInformationandRecordKeeping
PhysicianorHealthProviderAssessmentofIndividualNeeds PersonalHealthRecord(PHR)Checklist
Summary: Maintaininggoodhealthrecordscanhelpmakecaregivingeasier.Thissection includesaformtobringtoyourhealthcareproviderforanevaluationoftheperson withdementiaandaformtohelpyoucompleteapersonalhealthrecordforthe personwithdementia.
Whatinformationdoesmyhealthcareproviderneedtoevaluatethefunctional abilitiesofthepersonwithdementia? WhatinformationshouldIincludeinapersonalhealthrecordfortheperson withdementia?

Physician or Health Provider Assessment of Individual Needs

To the provider: To the provider: Your patient or a family member has taken this form from the Alzheimers Association Web site. We ask that the patient or the f amily member obtain accurate information about functional abilities from you, their health provider. The information you provide on this form will ensure the most appropriate care recommendations for your patient. To learn more about the Alzheimers Association, visit our website at www.alz.org.
Name: Date of assessment: List of diagnoses

1. 2. 3. 4. 5. 6. 7. 8. 9. 10.
Persons Abilities and Needs

For each item, indicate the level of assistance needed at this time. Only select one level. Personal Care
Bathing (including sponge bath, shower or tub):
Independent: receives no assistance (gets in and out of the tub if tub is the usual means of bathing) Assistance: receives assistance in bathing only one part of the body (such as the back or a leg) Dependent: receives assistance in bathing more than one part of the body (or is not bathed) and is not able to transfer to tub or shower on their own Additional Information:
Dressing:
Independent: gets clothes and gets completely dressed without assistance Assistance: gets clothes and gets dressed without assistance except for tying shoes Dependent: receives assistance in getting clothes or in getting dressed or stays partly or completely undressed Additional Information: 1 of 5
Toileting:
Independent: goes to bathroom, cleans self and arranges clothes without assistance (may use object of support such as a cane, walker or wheelchair and may manage night bedpan or commode, emptying it in the morning) Assistance: receives assistance in going to the bathroom or in cleansing self or in arranging clothes after elimination or in use of night bedpan or commode Dependent: doesnt go to the room termed bathroom for the elimination process (may require the use of disposable briefs) Additional Information:
Transfer:
Independent: moves in and out of bed as well as in and out of chair without assistance (may be using object for support such as cane or walker) Assistance: moves in and out of bed or chair with assistance Dependent: doesnt get out of bed Additional Information:
Continence:
Independent: controls urination and bowel movement completely by self Assistance: has occasional accidents Dependent: supervision helps keep urine or bowel control; catheter is used, or is incontinent Additional Information:
Feeding:
Independent: feeds self without assistance Assistance: feeds self except for getting assistance in cutting meat or buttering bread Dependent: receives assistance in feeding or is fed partly or completely by using tubes or intravenous fluids Additional Information:
Katz S, Downs TD, Cash HR, et al. Progress in the development of the index of ADL. Gerontologist. 1970;10:2030. Copyright The Gerontological Society of America. Reproduced by permission of the publisher.
Daily Tasks
Ability to use telephone:
Independent: operates telephone on own initiative looks up and dials numbers etc. Assistance: dials a few well known numbers Assistance: answers telephone but does not dial Dependent: does not use telephone at all Additional Information:
Shopping:
Independent: takes care of all shopping needs independently Assistance: shops independently for small purchases Assistance: needs to be accompanied on any shopping trip Dependent: completely unable to shop Additional Information: 2 of 5
Food preparation:
Independent: plans, prepares and serves adequate meals independently Assistance: prepares adequate meals if supplied with ingredients Assistance: heats and serves prepared meals, or prepares meals but does not maintain adequate diet Dependent: needs to have meals prepared and served Additional Information:
Housekeeping:
Independent: maintains house alone or with occasional assistance with heavy work or other domestic help Assistance: performs light daily tasks such as dishwashing, bedmaking Assistance: performs light daily tasks but cannot maintain acceptable level of cleanliness Assistance: needs help with all housekeeping tasks Dependent: does not participate in any housekeeping tasks Additional Information:
Laundry:
Independent: does personal laundry completely Assistance: launders small items- rinses socks, stockings etc. Dependent: all laundry must be done by others Additional Information:
Mode of transportation:
Independent: travels independently on public transportation or drives own car Assistance: arranges own travel via taxi but does not otherwise use public transportation Assistance: travels on public transportation when assisted or accompanied by another Assistance: travel limited to taxi or automobile with assistance of another Dependent: does not travel at all Additional Information:
Responsibility for own medications:

Independent: is responsible for taking medication in correct dosages at correct time Assistance: takes responsibility if medication is prepared in advance in separate dosages such as a pill box Assistance: is not capable of dispensing own medication Additional Information:
Ability to handle finances:

Independent: manages financial matters independently. Budgets, writes checks, pays rent, bills, goes to bank, collects and keeps track of income. Assistance: manages day to day purchases, but needs help with banking, major purchases etc. Dependent: incapable of handling money Additional Information:
Lawton MP, Brody EM. Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist. 1969;9:179186. Copyright The Gerontological Society of America. Reproduced by permission of the publisher.
3 of 5
Stages of Dementia
Based on your assessment, indicate the level of memory or cognitive impairment.
Stage 1: No cognitive impairment Unimpaired individuals experience no memory problems and none are evident to a health care professional during a medical interview. Stage 2: Very mild cognitive decline Individuals at this stage feel as if they have memory lapses, especially in forgetting familiar words or names or the location of keys, eyeglasses or other everyday objects. But these problems are not evident during a medical examination or apparent to friends, family or co-workers. Stage 3: Mild cognitive decline Friends, family or co-workers begin to notice deficiencies. Problems with memory or concentration may be measurable in clinical testing or discernible during a detailed medical interview. Common difficulties include: Word- or name-finding problems noticeable to family or close associates Decreased ability to remember names when introduced to new people Performance issues in social or work settings noticeable to family, friends or co-workers Reading a passage and retaining little material Losing or misplacing a valuable object Decline in ability to plan or organize Stage 4: Moderate cognitive decline At this stage, a careful medical interview detects clear-cut deficiencies in the following areas: Decreased knowledge of recent occasions or current events Impaired ability to perform challenging mental arithmetic-for example, to count backward from 100 by 7s Decreased capacity to perform complex tasks, such as marketing, planning dinner for guests or paying bills and managing finances Reduced memory of personal history The affected individual may seem subdued and withdrawn, especially in socially or mentally challenging situations Stage 5: Moderately severe cognitive decline Major gaps in memory and deficits in cognitive function emerge. Some assistance with day-to-day activities becomes essential. At this stage, individuals may: Be unable during a medical interview to recall such important details as their current address, their telephone number or the name of the college or high school from which they graduated Become confused about where they are or about the date, day of the week, or season Have trouble with less challenging mental arithmetic; for example, counting backward from 40 by 4s or from 20 by 2s Need help choosing proper clothing for the season or the occasion Usually retain substantial knowledge about themselves and know their own name and the names of their spouse or children Usually require no assistance with eating or using the toilet
4 of 5
Stages of Dementia (cont.)
Stage 6: Severe cognitive decline Memory difficulties continue to worsen, significant personality changes may emerge and affected individuals need extensive help with customary daily activities. At this stage, individuals may: Lose most awareness of recent experiences and events as well as of their surroundings Recollect their personal history imperfectly, although they generally recall their own name Occasionally forget the name of their spouse or primary caregiver but generally can distinguish familiar from unfamiliar faces Need help getting dressed properly; without supervision, may make such errors as putting pajamas over daytime clothes or shoes on wrong feet Experience disruption of their normal sleep/waking cycle Need help with handling details of toileting (flushing toilet, wiping and disposing of tissue properly) Have increasing episodes of urinary or fecal incontinence Experience significant personality changes and behavioral symptoms, including suspiciousness and delusions (for example, believing that their caregiver is an impostor); hallucinations (seeing or hearing things that are not really there); or compulsive, repetitive behaviors such as hand-wringing or tissue shredding Tend to wander and become lost Stage 7: Very severe cognitive decline This is the final stage of the disease when individuals lose the ability to respond to their environment, the ability to speak and, ultimately, the ability to control movement. Frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered Individuals need help with eating and toileting and there is general incontinence of urine Individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired.
Reisberg, B., Ferris, S.H., de Leon, M.J., Crook.,T.The global deterioration scale for assessment of primary degenerative dementia. American Journal of Psychiatry, 1982, 139: 1136-1139. Copyright 1983 by Barry Reisberg, M.D.
5 of 5
Personal Health Record (PHR) Checklist

A personal health record (PHR) is a continually updated collection of important information about your health or the health of someone youre caring for. When collecting information from your health records, be sure to include:
Personal identication, including name, birth date and social security number Emergency contacts Names, addresses and phone numbers of physician, dentist and other specialists Health insurance information Living wills and advance directives Organ donor authorization A list of signicant illnesses and surgeries Current medications and dosages Immunizations and their dates Allergies Important events, dates and hereditary conditions in your family history Results of a recent physical examination Opinions of specialists Important test results Eye and dental records Correspondence with insurance provider(s) Permission forms for release of information, operations and medical procedures Exercise regimen Use of herbal medications Record of mental health care or counseling
Source: American Health Information Management Association, 2006
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
NOTES __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________ __________________________________________
11.PoemstoLiftYourSpirit

ChildishLaughter LaughingNow SharedLaughter YesterdaysEyes,aPoemforCaregivers
Childish Laughter Seek the laughter you used as a child, Searching for it is needed for adult life-style, Dig deep into the corners of your heart, And each day will have a blissful start
Laughing Now The pain of the mind takes its toll Still Ill search for laughter in my soul Making use of it to manage lifes folds This steers my mind back into control
Shared Laughter Laughter cleanses cobwebs from the soul The louder it gets my heart feels less cold And spans my life into aged old When shared laughter bodily takes hold
Panola: My Kinfolks Land

Evelyn Dilworth-Williams 2003
A Poem for Caregivers

Yesterday's Eyes
There's unfamiliarity that I know Still in your life I'll always show While wond'ring where did you go With my love that continues to grow Looks come with a surprise From love that often cries On the face of no disguise Of yesterday's looking eyes I search but you aren't there Yet when I'm looking away Yesterday's eyes spark why I care Thus creating an understood day Though weariness takes hold Still I'll give my all to share Including weights that take control Of my gift of love with limitless care Time demands a retreat from the scene To the footpath of soft morning dew Restoring life self preserving means That recaptures a compassionate view This time veils an understandable you As I cling to yesterday's eyes today With a sustaining love that continues To forever see blessings flow our way The eyes of yesterday agree Know me when I know not Relying on you to know me When it's me that I forgot 2004 Evelyn Dilworth-Williams http://www.evelyndilworthwilliams.com/
All fact and topic sheets reproduced with the permission of the Alzheimers Association. Copyright Alzheimers Association, www.alz.org, 800.272.3900, with the exception of the Alzheimers Disease Medications fact sheet reproduced with the permission of the Alzheimers Disease Education & Referral (ADEAR) Center, www.nia.nih.gov/alzheimers, 800-438-4380.

Alzheimer S Dementia Caregiver Resource Guide

Uploaded by

Document Information

Original Description:

Original Title

Copyright

Available Formats

Share this document

Share or Embed Document

Sharing Options

Did you find this document useful?

Is this content inappropriate?

Copyright:

Available Formats

Alzheimer S Dementia Caregiver Resource Guide

Uploaded by

Copyright:

Available Formats

Alzheimers and Dementia Caregiver Resource Guide

UNC Institute on Aging

ABOUT THE CENTER

Research at the Center is concentrated in four areas:

THANK YOU FOR YOUR SUPPORT

Stages of Alzheimers Disease... 27 4. Medications 33

Alzheimers Disease Medications.. 35 Taking Medication Safely. 39 5. Safety 43

Tips on Personal Care.. 61 Incontinence... 63 Bathing 65 Dressing. 69 Eating. 71

WhatisAlzheimersDisease? AlzheimersDiseaseandOtherDementias 10WarningSignsofAlzheimers StatisticsonAlzheimersDiseaseandRelatedDementias2009

What is Alzheimer's Disease?

Is there any treatment?

What is the prognosis?

What research is being done?

Alzheimers Disease and Other Dementias

10 warning signs of Alzheimer's:

Challenges in planning or solving problems

Difficulty completing familiar tasks at home, at work or at leisure

Confusion with time or place

Trouble understanding visual images and spatial relationships

New problems with words in speaking or writing

Misplacing things and losing the ability to retrace steps

Decreased or poor judgment

Withdrawal from work or social activities

Changes in mood and personality

The difference between Alzheimer's and typical age-related changes

Typical age-related changes

Statistics on Alzheimers Disease and Related Dementias - 2009

Summary: ThediagnosisofAlzheimersdiseaseoftenconsistsofvarioustests.Thissection providesanoverviewofhowdoctorsmaytestapersonforAlzheimersdisease, includingsuchtopicsasmedicalhistory,mentalstatusevaluation,physical examination,andneurologicalexamination,amongothers.

Telling Others About an Alzheimer Diagnosis

Summary: ThissectiondescribeseachofthesevenstagesofAlzheimersdisease.Understanding thesestagescanhelpyoubettermeettheneedsofyourlovedonebyknowingwhat thepersonwithAlzheimerscanstillmanage.

Stages of Alzheimer's Disease

Summary: Choosingtherightmedicationforalovedonewithdementiaisfrequentlyaconcern forcaregivers.Thissectionprovidesanoverviewofhowmedicationsworkandhow tousethemsafely.

Alzheimers Disease Medications

Treatment for Moderate to Severe AD

Treatment for Mild to Moderate AD

DRUG TYPE AND USE

COMMON SIDE EFFECTS

Razadyne (galantamine) Also available as a generic drug

Cholinesterase inhibitor prescribed to treat symptoms of mild to moderate AD

Nausea, vomiting, diarrhea, weight loss, loss of appetite

Cholinesterase inhibitor prescribed to treat symptoms of mild to moderate AD

Nausea, vomiting, diarrhea, weight loss, loss of appetite, muscle weakness

Prevents the breakdown of acetylcholine in the brain

Nausea, vomiting, diarrhea

MANUFACTURERS RECOMMENDED DOSAGE

FOR MORE INFORMATION

(continued from front)

Dosage and Side Effects

For More Information

Taking Medication Safely

Safety SafetyChecklist Driving WanderingBehavior:PreparingforandPreventingIt

Summary: Thissectionprovidesinformationonhowyoucancreateasafeenvironmentforthe personwithdementiabothinsideandoutsidethehome. Thissectionwillanswer:

Tips For a Safe and Supportive Home

2005 Alzheimers Association

Wandering Behavior: Preparing for and Preventing It

TipsonPersonalCare Incontinence Bathing Dressing Eating OralHealthCareforOlderAdultswithDementia Hospitalization

Summary: Thissectionprovidesinformationonhowyoucanbettertakecareofthepersonwith dementia.Tipsonprovidingpersonalcare,includingtoileting,bathing,dressing, feeding,andoralhealthcare,andhandlinghospitalstays,areincluded. Thissectionwillanswer:

Providing Personal Care

Tips on Personal Care

2005 Alzheimers Association

Providing Personal Care

2005 Alzheimers Association

Organization: Contact: Address: ________________________________