Alzheimers Disease (AD) and Optimal Care Facilities

Brenda Velazquez Todd Pezzuti Amanda Merchant Spassena Koleva Richard Gruner Maryam Abdullah

Project Foci
physical settings in skilled nursing facilities steps taken to meet the special needs of these individuals measures undertaken to protect these highly vulnerable individuals from abuse ways physical surroundings and related activities can be improved in the future as the population of individuals with AD expands

Dementia of the Alzheimers Type

American Psychiatric Association (2000)

DSM-IV Diagnostic Criteria

Multiple cognitive deficits
Memory impairment Cognitive disturbances Aphasia Apraxia Agnosia Disturbance in executive functioning

Significant impairment in social or occupational functioning

Course
Tends to be slowly progressive Average duration from onset of symptoms to death is 8-10 years

Dementia of the Alzheimers Type

Normal brain

Alzheimers brain

Societal Significance of AD
Alzheimers Association (2005)

Statistics (USA)
1998
~1.09 - 4.58 million

2050 (projected)
~11.3 16 million 1 in 45 Americans 1 in 10 Americans said they had a family member with Alzheimers 1 in 3 knew someone with the disease

Alzheimers Prevalence by Gender

American Psychiatric Association (2000)

50.00% 40.00% 30.00% 20.00% 10.00% 0.00% Male Female Age 65 0.60% 0.80% Age 85 11% 14% Age 90 21% 25% Age 95 36% 41%

Societal Significance of AD
Centers for Medicare & Medicaid Services (2005) & Alzheimers Association (2005)

Economic Impact
Medicare
Federal health insurance program for:
People age 65 or older Some people under age 65 with disabilities

Part A
Acute hospitalization Skilled nursing facility placement (short-term)

Part B
Routine primary care office visits

Medicare costs for beneficiaries with AD to increase to $160 billion by 2010

Social Validity of Alzheimers

Centers for Medicare & Medicaid Services (2005) & Alzheimers Association (2005)

Economic Impact
Medicaid (Medi-Cal in California)
Federal & state program that pays for medical assistance for individuals with low incomes Includes:
Acute hospitalization Skilled nursing facility placement (long-term) Prescription medications

Medicaid expenditures on residential dementia care to increase to $24 billion by 2010

Skilled Nursing Facilities (SNFs)

Healthcare facility historically based on a medical model 24 hour nursing care with RNs &/or LVNs 24 hour assistance with activities of daily living (ADLs) e.g., bathing, toileting, dressing by CNAs Medically-related social services Recreational activities Therapeutic diets

Short-term SNF placement

Medicare Part A coverage in Certified Distinct Part of SNF
Eligible after acute hospitalization of at least 3 days post acute illness (e.g., stroke, surgery for hip fracture due to falling) Maximum benefit period of 100 days but often a stay is covered for only ~1-4 weeks

Requires skilled nursing

medically necessary care needed on a daily basis provided by a licensed nurse-RN or LVN (e.g., care planning after acute condition, sterile wound dressings, intravenous antibiotic)

Requires skilled rehabilitation

medically necessary therapy needed on a daily basis provided by physical, occupational, speech therapist (e.g., to gain bed mobility, transfer to/from wheelchair to/from bed, walk, gain strength to do activities of daily living

Long-term SNF placement

Medicaid coverage for long-term residents
Often residents or their families apply for Medicaid if an individual is unable to return to prior residence (e.g., independent in apartment, home with family, assisted living facility) after a short-term stay Shared room with 1 or 2 other individuals of the same gender Nursing observation and routine communication with attending physician Physician visits at least once per month Interdisciplinary plan of care with at least quarterly comprehensive assessment and update of care plan

Legal Issues
Unusual Legal Needs
Special Planning Problems Varying Legal Capacity High Vulnerability

Barriers to Receipt of Legal Services Special Care Facility Regulation Issues

Special Legal Problems in Patients Personal Affairs

Obtaining Government Benefits Exercising Control Over Health Care Patient Conduct Potentially Producing Negligence Liability Other Legal Affairs
Protecting Assets Transferring Assets Avoiding Estate Taxes

Surrogate Decision Solutions

Mechanisms
Trusts Powers of Attorney

Surrogate Decision Models

Traditional: Decision Makers Assessment of Patients Best Interests Patient-Oriented: Imagining Patients Choices Advanced Planning: Written Specifications of Preferences of Patient Shape Later Decisions

Dementia: A Risk Factor for Elder Abuse

Mental health factors such as dementia increase the risk of abuse in a caregiving relationship.
Prevalence of abuse of older adults suffering from dementia exceeds the rates incurred by older adults who are cognitively intact by almost 8%. Elder financial abuse can also be a criminal offense if theft or embezzlement or forgery are involved.

Types of Elder Abuse

Americans with Disabilities Act (ADA) and Olmstead Decision (1999)Supreme Court states that people with disabilities who live in assisted living facilities are capable and worthy of participating in community life. Elder Justice Act (2002)- provide federal resources to support State and community efforts on the front lines dedicated to fighting elder abuse with scarce resources and fragmented systems. Older Americans Act- State Units on Aging assure that older citizens have access to and assistance in securing and maintaining benefits, rights, opportunities and protections promised to them through various laws, policies and programs. Long-Term Care Ombudsman Program- advocate and resource for older adults who reside in assisted living facilities; helps residents and their families understand and exercise their rights to quality of care and quality of life. Establishment of federal guidelines on caring for dementia residents.
Other than the minimum nursing aide training requirement of 75 hours, no specific dementia care training is mandated federally.

Resident Rights

Criminal background checks on potential caregivers to assess the appropriateness of care facility employees.

USA TODAY's analysis of inspection records on assisted living facilities in seven states found that more than 1 in 10 inspected facilities had been cited for neglecting to obtain criminal background checks on employees, required by many states. Facilities Inspected
Alabama Arizona Colorado Florida Indiana New York Texas Totals 56 729 489 2534 53 45 1399 5305

Inspected Facilities with Background Check Violations

2 127 82 239 12 1 241 714

%
4 17 17 10 23 2 17 13

Totals include centers examined with on-site visits in a two-year period during 2000-02, not necessarily all facilities in each state; 2 Facility total includes only residential care centers licensed by the state; 3 Facility total includes only those centers licensed by the state to have assisted living beds. Note: Data among states cannot be compared because of variations in regulations and enforcement. Source: USA TODAY research

Regulating Special Care Facilities

Sources of Regulation
Medicare Certification Nursing Facility Regulation Special Care Facility Licensing

Regulatory Enforcement Strategies

Collaborative Punitive Mixed

Regulatory Criteria for Alzheimers Care Facilities

Environmental Features Affecting Quality of Life and Patient Dignity Patient Assessment and Care Planning Inclusion of Legal Representative in Planning Evaluation of Care Features and Results

Effective Context of Dementia

These effects are key to understanding how design can aggravate or help to ameliorate the population

Place disorientation Memory loss Potential to wander

Design Issues Affecting Well-Being

Meaning of home/home symbolism (Firey) Personalization Health Impacts (Ulrich)

Design Issues Affecting Well-Being

Orientation/Wayfinding (Lynch)
Macro level - site planning Micro level - interior building

Privacy (Altman)
Shared rooms vs. private rooms Amount of hands on care required

Therapeutic Design Qualities

Day, Carreon, & Stump (2000), Zeisel (2000) & Zeisel et al. (2003)

Structured Environment
Facilitate activities of daily living

Aesthetically Pleasing Environments

Non-institutional character Lighting Sensory stimulation

Ability to personalize spaces

Less strict policies on placement and dcor

Continuous pathways with destinations

Camouflaged exits

Sustainability of Design Interventions

Cost
Personalization costs very little Small design changes vs. large scale renovations

Temporal scope
Short-term costs versus long-term care

Maintenance and Modification

Awareness of design guidelines Collaboration

Formulation and Utilization of Design

Design guidelines formulated by
Professional experiences (caregivers and designers) Empirical research of SNFs Applying research from other disciplines (aging, sociology)

Utilization of guidelines
Caregiver must have awareness of environmental and design issues Current research must be available to designers and planners

Restorative Environments
Besides their functional properties, nursing care facilities also have psychological dimensions. They can serve as buffers against both physiological and psychological stress. The concept of restorative environment, which is an environment that promotes (and not merely permits) restoration (Hartig, 2004), can be used in designing the outdoor space of nursing homes as to promote relaxation and even healing.

Restorative Environments (cont.)

It is intuitive that a small but carefully planned area that mimics the sensation of being in nature can have important therapeutic potential for dementia patients regardless of their level of disability. A study by Alves (2003) has shown that participation in nature-related activities facilitates restoration and promotes the psychological well-being of nursing home residents. What may not be so obvious are the benefits that such space offers to the non-patients.

Restorative Environments (cont.)

Caring for individuals with dementia poses some unique challenges to the caregiver staff - sometimes the patients are irrational and/or disruptive and quite difficult to manage. As a result, the staff may become overwhelmed and the resulting psychological strain may reduce their motivation and productivity. An easily accessible restorative environment could serve as a psychological outlet where staff can diffuse any frustration and recharge.

Restorative Environments (cont.)

A restorative environment can also be used by the family and friends that are visiting the patients. One can imagine for example how difficult it could be to come to see a beloved relative who unfortunately fails to recognize you. Yet often in order to avoid disrupting the patient they may have to hide their feelings. A natural restorative environment can thus offer a few minutes of soothing solitude when a visitor is emotionally overwhelmed.

Elder Abuse Revisited

Elder abuse is a serious concern with individuals with dementia because they may lack the cognitive ability to discern and resist mistreatment. A study by Mills et al. (1998) found that when college students were given hypothetical scenarios of elder abuse they judged it as more justified when the elderly person was seen as senile and/or disruptive. In addition, the elderly person was seen as abusive him/herself even though the disruptive behaviors described were not unusual for people with dementia. Studies have shown one psychological impacts of elder abuse is higher psychological stress and these findings are more pronounced for individuals who are more dependent on their caregivers (Yan & Tang 2001). This is a cause for concern because elderly with dementia are particularly likely to be highly dependent on caregivers for assistance with daily living activities.

Disruptive and Agitated Behavior

Terri et al. (1998)

Affects up to 70-90% of residents with dementia In many residents behavior occurs daily Both residents and caregivers suffer from such behavior Applying psychological principles can benefit both residents and caregivers, by increasing residence compliance, decreasing resident aggression, agitation, and disruption

Common Behavioral Symptoms

OLeary, Haley & Paul (1993) & Terri et al. (1998)

Irritability Restlessness Physical/Verbal aggression Resisting needed assistance Pacing/Wandering

Deviation Amplification & Disruptive Behavior

Disruptive Behavior

Caregiver Resentment/ Anger

A-B-C Model of Behavior Treatment

Terri et al. (1998)

Based on Social-Learning Theory A= antecedent B= target behavior C= consequence of behavior Caregivers identify target behaviors and manipulate the antecedents to prevent the future occurrence of the disruptive behavior

Possible Antecedent Manipulations

Gail et al. (2005) & Teri et al. (1998)

Boredom
Bird-watching Housework Snacks

Loneliness
Bringing people together Activities

Quietness
Turning on TV Turning on radio

Other people
Separating quarrelsome people Allowing private time

Sustainability & Social Validity

Altman (1995) & Geller (1991)

It is unlikely that current Medicare & Medicaid programs will be as sustainable or socially valid given the dramatic rise in individuals with AD Individuals with early Alzheimers often only need stand-by assistance with ADLs rather than maximum assistance (e.g., two person assistance or mechanical lift assistance with transferring from bed to wheelchair) We recommend research investigating the sustainability and social validity of federal and state subsidies for residential care facilities for the elderly (RCFEs)

Cost-Effective Alternatives
RCFE Benefits
Often single-family homes licensed by the Department of Social Services More home-like environments Often licensed for only 6 individuals (as opposed to ~100 individuals in SNFs) Can be specialized to provide services only to individuals with AD Much less expensive (~$3000/month compared to SNF ~$5,000-10,000/month)

Cost-Effective Alternatives
RCFE Limitations
Unable to provide 24 hour nursing care if individual is experiencing an acute illness Individuals require transportation to routine primary care appointments Temporary alternative due to chronic and progressive nature of AD Potential increase in RCFE placements
Families may be less likely to provide caregiving services in own home and may be more likely to facilitate an RCFE placement if eligible for federal or state subsidies

Social Ecological Approach

Advantages
Design of care facilities involves interrelated questions about how the physical features of these facilities respond to and shape the needs of individuals with AD These questions involve care problems and opportunities in the psychological, social services, urban planning, legal, and environmental design realms, including some issues that involve interactions between factors related to these different fields

A social ecological approach is likely to be more helpful than a field-by-field approach in identifying and understanding the issues present in this specialized care environment, as well as in developing and implementing effective interventions
A traditional analysis might overlook the important role that the environmental characteristics of care institutions may play in the way patients, their families, and the caregiver staff feel and interact Such an approach may help to uncover important yet traditionally neglected dimensions of caregiving to people with AD, resulting in interventions that provide solutions with no or few unanticipated side-effects

The Analysis of the Problem & Opportunities for Community Intervention

Social Ecological Aspects

Our analysis has a social ecological basis because it considers the way the physical environment of care facilities for individuals with AD interacts with and influences the unique needs of this population and the individuals who provide services for it
To suggest possible dimensions of intervention, our analysis identifies particular physical features of care facilities for individuals with AD that are dysfunctional (thereby suggesting the need for interventions) and physical changes or improvements that would be more desirable (thereby indicating the dimensions of change in which interventions might be constructed) Finally, our project provides specific recommendations that can be directly applied in enhancing the lives of institutionalized individuals with AD and their caregivers

Interdisciplinary Analysis
Fields Represented

Law Psychology Economics Sociology Gerontology Architecture and Interior Design

Interdisciplinary Team
From the beginning, we expected to work as an interdisciplinary team. Indeed, this was the case in the end as each of us were based in our discipline's methodologies and theories while working jointly together. We commented on each other's additions to the problem and discussed key concepts in the course as applied to our issue during group meetings. Our collaboration readiness seemed to be quite high as evidenced by working well together and solving any issue that came up without tension or mistrust despite having worked together for only a short time and not being experts yet in our respective fields. Effectiveness factors
Met on five occasions for approximately one hour per meeting at UCI Communicated via email at least weekly

Annotated Sources
Assuring Safety for People with Dementia in Long-Term Care Facilities: A Focus on Staffing
Freeman, I.: Ethics, Law, and Aging Review; Vol. 9, 107-124; 2003

Assuring Safety for People with Dementia in Long-Term Care Facilities: A Focus on Staffing

is a useful source in that it provides insight to the potential abuse incurred by elderly dementia patients residing in assisted living facilities, and the precautions that should be taken to avoid them. The article stresses the importance of hiring staff that have been thoroughly screened prior to employment. Currently, only 21 states mandate criminal background checks and this is usually in response to news stories or a particular incident having occurred. Freeman continues with the discussion of the adequate and consistent need for staffing. With the lack of consensus about optimal staff-resident ratios in dementia care, every facility must establish and use a method to understand the day-to-day needs and ensure the safety of the residents. Dementia training is among the more important points addressed by this article. Patients with cognitive impairments, such as dementia, need to be cared for in a specialized manner which emphasizes the abuse prevention for the residents, but also the injury prevention for the workers. Presently, 15 states follow dementia training laws which improve patient care and caregiver knowledge. Various advocacy movements, such as the Elder Justice Act of 2003, are furthering the state level implementation of policies to protect against elderly abuse.

Annotated Sources
Alzheimers Association. (2005). Retrieved November 28, 2005, from http://www.alz.org This website provided general information about Alzheimers disease including an introduction about the disease, causes, warning signs, treatments, stages, myths and statistics. This website also provided a link to additional resources which I found to be helpful as well. The information is user-friendly and is geared to be accessible to the general population and therefore; was not meant to be academic or exclusively researchbased. I found the statistics section to be well-written and assisted me to understand the societal significance of this community problem. Specifically, the information on the projected rise in the number of individuals who will be diagnosed with Alzheimers disease by 2050 clarifies the gravity of this imminently overwhelming problem. Additionally, I found the statistics on the number of people who had family members with Alzheimers disease and the number of people who knew someone with Alzheimers disease telling of how this personally impacts many individuals in the United States. As previously stated, a limitation of this source was that it was not meant to be a peer-reviewed journal article but, nonetheless, I found it to be very valuable.

Annotated Sources
Mills, R.B., Vermette, V., & Malley-Morrison, K.(1998). Judgments about elder abuse and college students relationship with grandparents. Geronotology and geriatrics education, 19(2), 17-30.

Purpose: To investigate how college students judge the abusiveness and justifiability of an

elderly patient/adult caretaker scenarios. Question: How are perceptions of elder abuse related to prior history of contact and involvement with grandparents and by the elements of the scenarios? Participants: 105 college students in an intro psych. Course with mean age 18.9 years. Mostly Caucasian. Method: Students rated caretakers and elderly patients abusiveness in scenarios in which type of abuse was varied. They also rated their relationship with their grandparents. Results: Ratings of abusiveness and justifiability varied as a function of the type of abuse, with physical abuse receiving the highest and self-neglect the lowest ratings. Elderly parent was seen as more abusive when senile or agitated and abuse against him/her as more justified. Students with infrequent and uninvolved contact with their grandparents rated scenarios as less abusive and more justifiable.

Annotated Sources
"Regulations and Guidelines for Special Care Units" in U.S. Congress, Office of Technology Assessment, Special Care Units for People With Alzheimer's and Other Dementias: Consumer Education, Research, Regulatory, and Reimbursement Issues, OTA-H543 at 133-156 (Washington, DC: U.S. Government Printing Office, August 1992). This text chapter evaluates regulations and licensing standards for special care units aimed at Alzheimer's patients and other patients suffering from various forms of dementia. The evaluations were part of a broader study of these special care units by the federal Office of Technology Assessment (OTA). The overall study addressed a wide range of issues surrounding these units, including: 1) the characteristics of nursing home residents with dementia and problems in the care they receive in many nursing homes, 2) the characteristics of existing special care units, 3) the available information about their effectiveness, 4) the regulatory environment for special care units, and 5) further legal and ethical concerns related to special care units. The portion of the study analyzing regulations and licensing standards for special care units addressed Medicare standards for certifying facility operators to receive federal reimbursement for care of patients with Alzheimer's disease and other forms of dementia, general nursing home regulations that apply to special care units, further specialized requirements for special care units that are now applied by some states, features of government regulations that may discourage innovation in the design and operation of special care units, and guidelines for special care units that have been developed by various public and private organizations.

Annotated Sources
Teri, L., Logsdon, R.G., Weiner, M.F., Trimmer, L., Thal, L., Whall, A.L., Peskind, E. (1998). Treatment for agitation in dementia patients: A behavioral management approach. Psychotherapy: Theory, Research, Practice, Training, 4, 436-443. This paper presents a multisite, randomized, and controlled clinical trial study used to evaluate the effects of a standardized, social-learning-theory based approach to managing problem behaviors in people with dementia. The first step in the study was to introduce caregivers to social-learning-theory based interventions through the use of videotapes. Next caregivers were trained to target problem behaviors and subsequently, manipulate behavior antecedents. The training was successful in decreasing problematic behavior. The outcome of this study is particularly important to our interdisciplinary approach because without resident compliance and positive caregiver attitudes, these issues could potentially block the effectiveness of different interventions aimed at enhancing the Alzheimer patients overall quality of life.

Zeisel, J., Silverstein, N.M., Hyde, J., Levkoff, S., Lawton, M.P., & Holmes, W. (2003). Environmental correlates to behavioral health outcomes in Alzheimers special care units. The Gerontologist, 43 (5), 697-711. Zeisel and colleagues have created an empirical study whereby Alzheimer patients behavior, including depression, aggression, agitation, social withdrawal, and psychotic symptoms are linked with certain design features of special care units. These specific behavior variables were chosen because they are prevalent features of Alzheimer patients. Research has previously shown that environment does in fact influence behavior, however rarely has research covered whether design features can actually reduce symptoms and improve well-being. This study accomplishes the latter. An environment-behavior model specific to Alzheimer care was established in order for investigators to evaluate the environmental features of the studied special care units. HLM (hierarchical linear modeling) stats were used to compare the design features to the patients behavior while keeping in mind individual differences and quality-of-care. The results of their study showed that environmental variables can impact symptoms and well-being. For example, the degree of privacypersonalization was negatively correlated with aggression meaning that patients with more privacy and more opportunities for personalizing their space scored lower on aggression scales. The researchers acknowledge that environmental and behavioral approaches together with medicine is the best way to combat symptoms of Alzheimers Disease. They do point out that with rising medical costs it is important to look for other ways to reduce Alzheimer symptoms, such as the environmental modifications in this study.

Annotated Sources

References
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References (cont.)
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References (cont.)
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References (cont.)
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References (cont.)
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References (cont.)
Yan,E., & Tang C. (2001) Prevalence and psychological impact of Chinese elder abuse. J.Interpers.Violence, 16(11), 1158-1174. Zeisel, J. (2000). Environmental design effects on Alzheimer symptoms in long term care residences. World Hospitals and Health Services, 36 (3), 27-31.