Alzheimer’s & Dementia

10 STEPS TO PLANNING FOR ALZHEIMER’S DISEASE & OTHER DEMENTIAS

A GUIDE FOR FAMILY CAREGIVERS

CARING FOR A PERSON WITH MEMORY LOSS OR DEMENTIA CAN BE CHALLENGING.

THE FOLLOWING TEN STEPS CAN HELP CAREGIVERS PROVIDE THE BEST POSSIBLE CARE FOR
THOSE WITH THE DISEASE, WHILE MAINTAINING THEIR OWN HEALTH AND WELL-BEING.

STEP 1: GET A DIAGNOSIS AS EARLY AS POSSIBLE BASED ON A THOROUGH MEMORY

ASSESSMENT OR COGNITIVE EVALUATION

When a family member or friend is showing signs of memory loss or other cognitive difficulties, it’s
time to talk to his or her primary doctor about these concerns. The primary doctor may evaluate the
person or you may want to make an appointment with a geriatric specialist or at a memory
assessment clinic. A good evaluation includes thorough physical, cognitive, and laboratory testing,
as well as obtaining a detailed description of the cognitive changes that the patient and/or family
have observed.

AN EARLY DIAGNOSIS IS IMPORTANT BECAUSE:

• There are many things that can cause memory loss and other cognitive changes, and the
person’s condition may be treatable or reversible.
• If a disease such as Alzheimer’s is diagnosed, treatments are available that can delay the
progression of symptoms and are most effective if started early in the disease process.
• Families learn more about what to expect and what the course of the illness may be and are
better able to plan for the future together.
• The person with the disease can take a more active role in legal and financial planning
decisions, learn tips and coping strategies, and choose how to prioritize the time remaining
before symptoms worsen.

STEP 2: EDUCATE YOURSELF AND OTHERS

Education is important because Alzheimer’s and other dementia-causing diseases bring new and
unfamiliar challenges and issues for families. Learning about the disease and how to manage it
may:
• Let you know what to expect throughout the course of the illness.
• Help to alleviate the stress of the unknown.
• Help you make informed decisions and be prepared for the future.
• Help you learn effective caregiving skills and techniques in order to provide a better quality of
life for your loved one at all stages of the disease.

WAYS TO EDUCATE YOURSELF AND YOUR FAMILY:

• Have family members present at time of diagnosis and at follow-up meetings so that everyone
hears the same information and is able to ask questions.
• Attend Alzheimer’s & Dementia Alliance educational programs and support groups.
• Visit the Alzheimer’s & Dementia Alliance website for up-to-date information.
• Read books, informational brochures, and handouts.
• Become familiar with local resources.
STEP 3: GET SUPPORT FROM OTHERS

Trying to do it all yourself could exhaust you and affect your health. The support of family and
friends can be an enormous help. .

• Be open to asking for help from friends, family, neighbors, faith community, etc.
• Use the community services available to you.
• Join a caregiver support group
• Talk with friends and family.

STEP 4: MAKE FUTURE PLANS WITH FAMILY

It is important to plan early because:

• In the early stages, the person with Alzheimer’s or other dementia can still be actively involved
in making decisions for the future.
• A plan will be in place as needs change or in case of a crisis situation.
• The family will know the person’s wishes, which may lessen confusion or disagreements when
plans need to be implemented.
• Family members can each be clear on how they can help and what their limits are.

HOW TO BEGIN PLANNING:

• Hold a family meeting involving as many family members and loved ones as possible.
• Get input from everyone including the person with Alzheimer’s or other dementia if he or she is
still capable of participating.
• Identify potential future needs and how these will be met and by whom.
• Set up clear lines of communication.
• Be realistic and empathetic with each other.

STEP 5: BEGIN LEGAL AND FINANCIAL PLANNING

Legal and financial planning should begin as soon as possible and includes putting in place
documents that authorize another person to make health care and financial decisions as well as
developing financial plans for long-term care coverage.

HOW TO BEGIN PLANNING:

• Complete a Health Care Power of Attorney for yourself and for the person with Alzheimer’s or
other dementia. This form appoints a family member or friend to be the health care agent and to
make health-related decisions when the person is no longer capable.

STEP 6: MAKE ADJUSTMENTS TO SUPPORT THE PERSON WITH DEMENTIA

• Make adaptations to accommodate changing needs and to provide a safe and supportive
environment.
• Provide routine and structure to the day to lessen confusion and promote success.
• Adjust ways of communicating. People with dementia may find it increasingly difficult to express
themselves in words and have trouble understanding what has been said, but the need for
communication continues to be important even as the disease progresses. Try new approaches
to listening and speaking.
• Connect the person to his/her environment through enjoyable involvement and activities that
structure time and make the best of retained and existing abilities. You can continue to enjoy
time together and share special moments!
STEP 7: USE AVAILABLE SERVICES AND ASSISTANCE

Types of services you may need:

• In-home respite and companion care
• Home maintenance services (cleaning, yard work, etc.)
• Home health and personal care services
• Adult day programs
• Geriatric case managers
• Senior coalitions or county aging units

STEP 8: LEARN ABOUT FACILITY CARE

Choosing facility care is never an easy decision for families. Yet, there may come a time when the
person with dementia needs a more structured setting. Some facilities have “dementia-specific” units
or “special care” units to provide specialized programming and care for persons with Alzheimer’s
disease or a related disorder. It is important to remember that there is no “right” time for everyone.
Each person and family is different, and there are many factors to consider.

Some factors to consider when making the decision:

• Is the person having increasing difficulty with personal care and needing more assistance?
• Is the home environment no longer safe for the person?
• Is caregiving taking a toll on the caregivers’ physical and emotional health?

STEP 9: TAKE CARE OF YOURSELF AND MANAGE YOUR STRESS LEVEL

In order to be an effective caregiver, you need to maintain your own health and well-being. It’s
easy for caregivers to devote themselves totally to caregiving and neglect their own needs. Don’t fall
into that habit. Stress can manifest itself physically (blurred vision, digestive problems, high blood
pressure), emotionally (depression, frustration, loss of self-esteem) and behaviorally (irritability, lack
of concentration, loss of appetite). Be alert to your own stress symptoms and get help.

WAYS TO TAKE CARE OF YOURSELF:

• Try to get adequate sleep and exercise, and maintain a healthy diet.
• Maintain friendships, interests, and hobbies.
• Have realistic expectations of yourself and your loved one.
• Take one day at a time and avoid anticipating the worst.

STEP 10: GIVE YOURSELF CREDIT, NOT GUILT

You’re human. You may occasionally lose patience and do or say things you may regret. Remind
yourself that you weren’t perfect before you became a caregiver, and there’s no reason to expect
perfection now. Give yourself credit. We all do the best we can in our particular circumstances. You
are there for your family member with dementia, and that’s something to be proud of.

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 CAREGIVING

Introduction

Caregiving takes many forms. Many of us help older, sick, or disabled family members and friends

every day. We know we are helping, but we don't think of ourselves as caregivers. We are glad to do this

and feel rewarded by it, but if the demands are heavy, over time we can also become exhausted and

stressed. We think we should be able to handle caregiving roles on top of busy work and family

schedules and begin to feel guilty and depressed as our stamina wanes.

Caregiving: A Universal Occupation

Who Are Caregivers?

The short answer is most of us, at some point in our lives. Caregivers are daughters, wives, husbands,

sons, grandchildren, nieces, nephews, partners and friends. While some people receive care from paid

caregivers, most rely on unpaid assistance from families, friends and neighbors.

CAREGIVERS MANAGE A WIDE RANGE OF RESPONSIBILITIES. IN YOUR FAMILY, FOR

EXAMPLE, ARE YOU THE PERSON WHO:

 Buys groceries, cooks, cleans house or does laundry for someone who needs special help doing these

things?

 Helps a family member get dressed, take a shower and take medicine?

 Helps with transferring someone in and out of bed, helps with physical therapy, injections, feeding tubes

or other medical procedures?

 Makes medical appointments and drives to the doctor and drugstore?

 Talks with the doctors, care managers and others to understand what needs to be done?

 Spends time at work handling a crisis or making plans to help a family member who is sick?

 Is the designated "on-call" family member for problems?

In small doses, these jobs are manageable. But having to juggle competing caregiving demands with the

demands of your own life on an ongoing basis can be quite a challenge.

 CAREGIVING ROLES AND DEMANDS ARE IMPACTED BY A NUMBER OF OTHER FACTORS,

Type of illness. Caring for someone with Alzheimer's disease, other dementias, or other brain-impairing

disorders can be more stressful than caring for someone with a physical impairment. Caring for someone

with a cognitive disorder can be a 24/7 job due to the unpredictability of the care recipient's behavior

 Long-distance caregiving. Long-distance caregiving is usually defined as care provided by a caregiver

living more than an hour away from the care recipient. Caring from a distance is difficult both

emotionally and logistically, and is most common in situations where adult children and their parents do

not live in the same area. In these cases, the caregiver's role is not as much "hands-on" as it is gathering

information about available resources, coordinating services and putting together a "team" of family,

friends and paid help that can meet the care recipient's needs.

 Urban versus rural settings. Caregivers living in rural settings face unique challenges. These include

fewer available formal services, fewer physicians and health education services, transportation

difficulties, weather problems in winter, geographic distance and isolation.

 Different cultural approaches to caregiving. The United States' great diversity means that families bring

their own histories, traditions and rituals to caregiving. In many cultures, there are family expectations

about the caregiving roles of adult children; this is especially true in cultures where daughters or

daughters-in-law are expected to assume the primary caregiver role for aging parents.

For some people, caregiving occurs gradually over time. For others, it can happen overnight. Caregivers

may be full- or part-time; live with their loved one or provide care from a distance. Caregivers provide a

wide range of services, from simple help such as grocery shopping, to complex medical procedures. For

the most part, friends, neighbors, and most of all, families, provide–without pay–the vast majority of

healthcare in this country.

 FIRST STEPS: HELP FOR NEW CAREGIVERS

It is easy to become overwhelmed as a new caregiver. Five steps that can help are:

 Start with a diagnosis. Learning about a family member's diagnosis helps caregivers understand the

disease process and plan ahead realistically.

 Talk about finances and healthcare wishes. Having these conversations can be difficult, but completing

Durable Powers of Attorney for finances and healthcare can help relieve anxiety and better prepare for

the future.

 Consider inviting family and close friends to come together and discuss the care needed. If possible,

it's helpful to include the care recipient in this meeting. This meeting gives caregivers a chance to say

what they need, plan for care and ask others for assistance.

 Take advantage of community resources such as Meals on Wheels and adult day programs. These

resources help relieve the workload and offer a break. Look for caregiver educational programs that will

increase knowledge and confidence.

 Find support. The most important thing is for caregivers to not become isolated as they take on more

responsibility and as social life moves into the background. Online and in-person groups can be very

helpful in connecting with others in the same circumstances. Caregivers can call Family Caregiver

 While caregivers can be found across the age span, the majority of caregivers are middle-aged (35-64

years old

 Most caregivers are employed. Among caregivers age 50-64 years old, an estimated 60% are working full

or part-time.

 Studies show that ethnic minority caregivers provide more care than their white counter-parts11 and

report worse physical health than white caregivers.

 Many caregivers of older people are themselves elderly. Of those caring for someone aged 65+, the

average age of caregivers is 63 years with one third of these caregivers in fair to poor health .

 Nearly half of caregivers provide fewer than eight hours of care per week, while nearly one in five

provide more than 40 hours of care per week

 A statewide California study of caregivers of adults with cognitive disorders such as Alzheimer's showed

that caregivers provided an average of 84 hours of care per week, the equivalent of more than two full-

time jobs.15 Older caregivers often spend the most hours providing car 6 and the amount of time spent

caring increases substantially as cognitive impairment worsens

 Caregiving can last from less than a year to more than 40 years. In a 2003 study, caregivers were found to

spend an average of 4.3 years providing care. Older caregivers (50+) are more likely to have been

caregiving for more than 10 years (17%).

 Most caregivers live near the people they care for. Eighty-three percent of caregivers care for relatives,
with 24% living with the care recipient, 61% living up to one hour away, and 15%—or about 7,000,000
caregivers—living a one- to two- hour drive or more away.

 EFFECTS OF CAREGIVING

Impact on Physical and Emotional Health

Recent medical advances, shorter hospital stays, increasing life spans with better management of chronic

illnesses, limited discharge planning, a shortage of homecare workers, and the expansion of home care

technology have increased the caregiving responsibilities of families. Family caregivers are being asked to

shoulder greater burdens for longer periods of time. In addition to more complex care, conflicting

demands of jobs and family, increasing economic pressure, and the physical and emotional demands of

long-term caregiving can result in major health impacts on caregivers.

Over all, caregivers who experience the greatest emotional stress tend to be female. They are at risk for

high levels of stress, frustration, anxiety, exhaustion and anger, depression, increased use of alcohol or

other substances, reduced immune response, poor physical health and more chronic conditions,

neglecting their own care and have higher mortality rates compared to non caregivers.

In addition, most caregivers are ill-prepared for their role and provide care with little or no support; yet

more than one-third of caregivers continue to provide intense care to others while suffering from poor

health themselves.23 An influential factor in a caregiver's decision to place an impaired relative in a long-

term care facility is the family caregiver's own physical health

Legal Issues

It is important to make legal preparations in the event a parent becomes cognitively impaired. Typical

concerns include who will manage the confused person's money, who will make important health care

decisions and how to plan for long-term care.

An attorney can help plan for the financial aspects of long-term care needs, assist with surrogate decision-

making tools such as the durable power of attorney (DPA) and a durable power of attorney for health
care (DPAHC), and provide guidance in obtaining a conservatorship should the care recipient lack the

capacity to make decisions. A conservatorship provides the legal authority to manage a person's finances,

estate, personal affairs, assets and medical care.30

The Need for Support

Because of the multi-faceted role that family and informal caregivers play, they need a range of support

services to remain healthy, improve their caregiving skills and remain in their caregiving role. Support

services include information, assistance, counseling, respite, home modifications or assistive devices,

caregiver and family counseling, and support groups. While many services are available through local

government agencies, service organizations, or faith-based organizations, employers' programs also can

mitigate the impact that caregiving can have on workers.

Services that improve caregiver depression, anxiety and anger benefit both the caregiver and the care

recipient.31 Evidence also shows that caregiver support delays or prevents nursing home placement;

people with moderate dementia have been able to defer placement by nearly 1.5 years when their family

members receive caregiver services, including counseling, information and ongoing support.

Caregivers Community

In partnership with
Caregivers are often family members or friends who provide important physical, practical, and emotional
support to a person with cancer. Caregivers may have a range of responsibilities on a daily or as-needed
basis. Below are some of the tasks that caregivers may take on:

 Providing support and encouragement

 Giving medications

 Helping manage symptoms and side effects

 Coordinating medical appointments

 Providing a ride to appointments

 Assisting with meals

 Helping with daily chores

 Handling legal and financial issues, including insurance and billing problems
TYPES OF CAREGIVING

There are many ways to be a caregiver. For some, it may mean providing 24-hour care. For others, it may
mean researching medical information or arranging for help. Each situation is unique. No one path
applies to all people with cancer and their families. And as the disease and treatment changes, so will the
caregiver's role.

CAREGIVERS MAY LIVE IN THE HOME, SHARE RESPONSIBILITIES, OR PROVIDE CARE FROM A
DISTANCE.

Live-in caregiver. One person, such as a spouse or partner has the role of the primary or lead caregiver.
Nearby family, friends, or neighbors may also be a caregiver. Most caregivers live within 20 minutes of
the person they care for, according to the Family Caregiver Alliance.
Shared responsibility caregiver. Some caregivers share the responsibility with other people. Often, the
person who provides each caregiving task is able to best carry out that task.
Combining caregiving among family members is often hard because past conflicts may surface or
worsen. However, caring for a person with cancer can also bring families closer together.

Long-distance caregiver. In some cases, a family member or friend who does not live near the person
with cancer manages care. A long-distance caregiver often provides services by phone or email.
A long-distance caregiver may arrange for local volunteers, friends, and co-workers to help the person
with cancer.

Caring for a person with cancer who lives far away is often emotionally stressful. The distance between
caregiver and the person they care for can magnify the usual caregiving worries. It may also cause
financial worries. However, there are steps you can take to be an effective caregiver no matter how far
away you are.

THE CHALLENGES AND JOYS OF CAREGIVING

To manage the challenges of caregiving, start by looking at all of your caregiving choices. Then, find
ways to take care of yourself while giving care.
The challenges of caregiving may include:

 Physical and emotional stress

 Less time for personal and family life

 The need to balance job and caregiving responsibilities

 Financial stress

 Lack of privacy

 Feelings of isolation and loneliness

It is also helpful to focus on the rewarding parts of caregiving:

 Committing to providing as much support as you can to the person who is ill.

 Making a difference in the quality of life and well-being of the person who is ill.
 Getting a unique opportunity to enrich or renew a relationship with the person who is ill.

 Setting a positive tone of respect and giving that other people can follow.

The duties of a caregiver can vary depending on their connection with the person they are proving the
care for. It also depends on the support the older person needs. In many cases, live-in caregivers are the
relatives of the person they are providing the support and assistance.

Family caregivers offer in-home care and non-medical services. No matter the amount of love that exists
between a caregiver and an older person, caregiver responsibility and long-term care is a daunting
challenge that gets more difficult as the aging parent gets older.
More than 50 percent of primary caregivers have noted that the role of caregiving takes a toll on their
productivity at work. Another 75 percent of primary caregivers indicated that caregiving takes a toll on
their family.
75 percent of primary caregivers indicated that caregiving takes a toll on their family.
Almost all caregivers, including family caregivers, say the role is a very demanding one. The
responsibility and expectations of a caregiver are really high. Some caregivers say they lose their sense of
privacy in the job.
Caregiving can be challenging both on someone’s psychological and physical well-being. If you don’t
take control of your time, you might hardly have enough time for yourself as a caregiver, even if you are
only doing such for your parents.
While being a live-in caregiver is quite challenging, being a support system for someone who is unable to
help themselves is purely rewarding. It can be even more rewarding if you take into consideration the
responsibilities required of you if you painstakingly carry them out.

WHAT ARE THOSE RESPONSIBILITIES REQUIRED OF A CAREGIVER?

Some of the personal care includes bathing, grooming, and dressing up. There is a huge task on the shoulders of
caregivers to help the elderly with these duties.
1. Assisting With Personal Care
One of the biggest responsibilities of a caregiver is to assist the older person with personal care. Some of
the personal care includes bathing, grooming, and dressing. There is a huge task on the shoulders of
caregivers to help the elderly with these duties.
As a caregiver, part of the personal care responsibilities also includes toileting. Some older people have
difficulties with mobility which affects their ease of toileting. They usually need support to balance well
and clean themselves after using the toilet.
Others who are still somewhat mobile might need help doing some exercise like jogging in the morning
or taking a walk. It is part of the responsibilities of a caregiver to guide them during any form of exercise
which is a good thing for their health.

2. Food Preparation
The preparation of food is not limited to cooking alone. Caregivers should be able to go beyond the mere
preparation of meals. The older person must be assured that you are there for shopping of the food
ingredients, arranging the food items where they should be, and more.
As a caregiver, you are responsible for cooking the meal, dishing the meal appropriately, feeding the
senior if required, cleaning the dishes and keeping the kitchen in its best possible state.
3. General Health Care
Health is the most important aspect of aging. Older people, at this point of their lives, do not prioritise
any other thing above their health. As such, your help comes handy when it comes to taking proper care
of older people, especially when it concerns their health in particular.
As many older people usually experience a decline in cognitive abilities, it is common for them to forget
the doctor’s prescription for a particular drug. It is possible for them to take beyond or below the
specified dose.
This is where your responsibility comes in. You are responsible to overseeing their drug intake. You are
to ensure that aging parents take the medication at the exact time and with the prescribed time interval
while not overdosing. You are also responsible for keeping with medical appointments.
4. Mobility Assistance

Even aging parents with mobility issues want to move about. They even love walking with their adult
children or their caregiver. Older people want to go out to see what is happening. They think they must
have missed a lot while staying indoors for some time.
Often, they just want to stay outside and look around, nothing more. It is your responsibility to help them
do all of this. You will also need to help those who are immobile to get in and out of wheelchair.
Also, the very aged ones who might have difficulty entering into a vehicle will need your help. The
responsibilities of a caregiver are challenging. However, you have to see the precious help you are
providing to someone who will always be thankful you are there to help.
5. PERSONAL SUPERVISION
Older parents usually act like babies as their ages increase. It is no one’s fault. That is how nature has
been tailored. Their baby-like actions means you will have to do some supervision and give them orders
to stick by. You are not meant to sound arrogant or disobedient.
You are only meant to give them the care you would give to a baby. They need supervision on what to
wear, where to walk, and where an item is located, etc. Put simply, your responsibility as a caregiver is to
provide help whenever it is needed.
6. EMOTIONAL SUPPORT
More than being a caregiver, you have to be a reliable companion. Seniors need people who can stay by
them, people who they can discuss and laugh with, and people who they can share their deep feelings
with. It might be quite a challenge if you have lots to do at home, especially if you are raising a young
family.
However, the few minutes that you give to an older person can make all the difference in the world. You
have to be a companion they can rely on when it comes to every matter of life including health,
emotional, physical, and personal matters.
7. TRANSPORTATION
Older people need help when moving from one place to another. Much of transportation has been
covered in this article. However, there is a little difference here.

While you can support them to move from one place to another, it is more important if you can run those
errands for them. You should be able to visit the clinic to help them get their medications. You can do
some activities for them to give them some ease.
As a mediator, you are tasked with collecting the information from the doctors and giving such information to your
aging parent and your siblings.
8. BE THE MEDIATOR
The responsibility of a mediator is to be the person who takes the position to pass information and
feedback from one individual to another. That is who you should be if you really want to be impactful as
a caregiver.
As the child of the aging parent, chances are you are already doing it. However, there is more to being a
mediator than you think. As a mediator, you are tasked with collecting the information from the doctors
and giving such information to your aging parent and your siblings.
You are to follow the health of the older person very closely. You should make it your responsibility to
take note of any changes in the older person’s health. You are to record and report any difference or
alteration in the health of the older person.
Your major responsibility as a mediator is to focus on the aging parent and pass of any observation to the
appropriate persons. This is the kind of responsibility that makes anyone a good caregiver.
9. HOME ORGANIZATION
Older people do not have the strength to clean homes and arrange rooms the way you can. Therefore,
organizing the home of your aging parents becomes your responsibility. You are tasked with general
house cleaning and cleaning of a specific part of the apartment like the toilet. You are also responsible for
cleaning of house furniture and equipment.
10. HANDLE A CRISIS OR MEDICAL EMERGENCY
This is the scary part for some caregivers. However, there is nothing to fear about an older person
experiencing a medical crisis. If you have been playing your role as a caregiver very well, you wouldn’t
have to be terrified.
In times of a medical crisis or emergency, you only have to call other relatives of the elderly person. You
should also get a quick means of transporting the older person to the hospital for sound medical
examinations.
11. BACK-UP CAREGIVING
You might have to support another caregiver when they are not available. You have to be ready to
shoulder these responsibilities even if you are acting as a back-up to someone else.

Caregiving responsibilities are important for both the caregiver and the recipient. Knowing your
responsibilities will help you avoid unnecessary clash with the older person or family members.
Some of the responsibilities of a caregiver like running errands for the older person can even be done
while going to or coming from a location. You can buy your family items together with that of the older
person.
At AginginPlace.org, our goal is to help seniors stay in their homes as they age, by providing their family
members and caregivers with the resources to make better decisions. We strive to help you and your
loved ones plan and prepare everything you need to live a comfortable, happy life as you age.