NADD U.S. Policy Update (from the NADD Bulletin Volume VII Number 5)

Complete listing

Aging and Alzheimer's Disease among Persons with Developmental Disabilities

Philip McCallion, Ph.D., Director

Increases in life expectancy expose a growing number of persons with developmental disabilities to age related diseases such as Alzheimer's Disease (AD). For many this becomes at least a secondary and for some, over time, a more significant disabling condition.

There is some argument about whether the risk for AD for most persons with developmental disabilities is greater or the same as the general population, but there is increasing recognition that persons with Down Syndrome are at greater risk for occurrence, and on-set on average is at younger ages. Regardless, as the population of persons with developmental disabilities redistributes into older ages, providers are increasingly challenged to realign services to address this reality. There are reports that some providers are supporting aging in place, but also of pressures to develop specialized AD units and to transfer to more restrictive settings (Janicki, McCallion & Dalton, 2002). The concern is that such movements of consumers often reflects a reactive rather than a proactive approach to AD care concerns. The challenge is to plan for growth in this concern and to realign services accordingly.

Alzheimer's disease challenges both the programming philosophies prevalent in developmental disabilities services and the ways in which resources have been allotted to support care. Prevalent programming concepts for persons with developmental disabilities emphasize being in the community, making one's own decisions, building a network of relationships, holding a job, and being more independent this year than last year. However, AD is a progressive disease that will mean over time declines not accruals in skills, increased needs for supervision and growing co-morbid health concerns. This means that increasingly over time in homes where individuals were largely independent in self care, they will need increasing assistance, persons who negotiated stairs in two story homes will need ground floor bedrooms and fully accessible bathrooms, and where persons went to a job or program every day they may increasingly have health concerns that cause them to stay home, they may no longer be able to hold a job and when they do go to an habilitative program they will need different activities than those usually provided. Homes that look like any other home in the community may not easily meet increased accessibility needs, staffing patterns that assume everyone leaves during the day may no longer be sufficient and day programs who sent home when people were "ill" may not be equipped to support growing infirmity and in the later stages of dementia, for some persons, increased incontinence.

Already there are reports that care in these circumstances is both physically and emotionally draining for many staff (McCallion, McCarron, & Force, 2004; McCarron, Gill, McCallion & Begley, in press) and that some agencies because of staffing and resource concerns are referring people with developmental disabilities and AD to more restrictive settings (Janicki et al., 2002). The care needs clearly have implications for level and type of staffing and for staff training, programming approaches in both residential and day program settings, and the continued appropriateness of some physical settings. Different approaches are needed if critical issues for these persons are to be addressed and community life is to be maintained. Those critical issues have been identified as strategies to promote (1) Absence of pain, (2) Maintenance of health, (3) Psychosocial well-being, (4) Skills maintenance with support when one declines, (5) Absence of and supportive responses to problem behaviors, (6) Continued leisure and community participation, (7) Enjoyment of family and friends, (8) Dementia -focused programming, (9) Supportive living spaces, and (10) Alleviation of caregiver burden (McCallion & McCarron, in press).

As the service system grapples with this new reality, services will be needed that address (1) diagnosis and assessment, (2) multi-disciplinary assessment and clinical support, (3) comprehensive person centered services, (4) advice on environmental modification and (5) staff and family education and training. These are familiar service titles but the services themselves will change radically. Clinics, day programs and residential providers must decide where they fit in this redevelopment. New approaches to staffing, and different types of staff will also be needed. This has educational, regulatory and funding components to be addressed. A further difficult and potentially costly issue will be to examine the appropriateness of the existing out of home housing stock and making critical decisions in this arena for the future of community care.

Janicki, M.P. , McCallion, P., & Dalton, A.J.(2002). Dementia-Related Care Decision-Making in Group Homes for Persons with Intellectual Disabilities. Journal of Gerontological Social Work, 38(1/2), 179-196.

McCallion, P., & McCarron, M. (in press). A perspective on quality of life in dementia care. Mental Retardation.

McCallion, P., McCarron, M., & Force, L.T. (2004) A Measure of Subjective Burden for Dementia Care: The Caregiving Difficulty Scale-Intellectual Disability. Journal of Intellectual Disability Research. 48(6).

McCarron, M., Gill, M., McCallion, P., & Begley, C. (in press). Alzheimer's Dementia in Persons with Down syndrome: Predicting Time Spent on Day-to-Day Caregiving. Dementia.

Support for his work with persons with developmental disabilities and AD providers by an Alzheimer's Demonstration Project funded by the Administration on Aging is acknowledged by the author However the opinions expressed here are those of the author.

Philip McCallion, Ph.D., Director

Center for Excellence in Aging Services

University at Albany