Information about the Preparing Community Agencies for Adults Affected by Dementia Project (PCAD Project)

The Project
This project focuses on dementia, a major concern related to the pathological aging of older adults with intellectual disabilities. As this population progressively ages, dementia is becoming a significant community support challenge. To assist community agencies about diagnostics and care management practices with regard to this "compounding disability," this project is working to test the feasibility of applying select community care models, prepare a training pack on dementia, surveying state agencies as to dementia services, and evaluating staff time and agency costs related to community dementia care.

Workplan for Agencies Participating in the Study (pdf in a new window)

Project aims
(1) assess how agencies are coping with adapting services to meet the stage dependent needs of older adults affected by dementia,
(2) define workable program models for both residential care and day services, and
(3) develop a training pack that can be used to help agencies become more capable at providing community-based services for adults and families affected by dementia.
(4) determine how state developmental disabilities and aging agencies are planning and providing for the growing incidence of dementia in community programs.
(5) determine the comparative fiscal cost of dementia care for persons with intellectual and developmental disabilities in community care settings.
(6) develop informational materials for use buy state agencies and local providers on planning and funding services in support of community dementia care for persons with intellectual and developmental disabilities.
Products include workshops and trainings, how-to-manuals, and technical assistance.

Who is involved?
This project is funded through a grant from the National Institute on Disability and Rehabilitation Research, Washington, D.C., and awarded through the Rehabilitation Research and Training Center on Aging with Developmental Disabilities at the University of Illinois at Chicago.

The principals for the project are:
Matthew P. Janicki, Ph.D.- University of Illinois at Chicago
Philip McCallion, Ph.D. -University at Albany
Arthur J. Dalton, Ph.D. -New York State Institute for Basic Research in Developmental Disabilities

Why is community care provision of adults affected by dementia a concern?
Contrary to what happens when an individual has a lifelong intellectual disability, the mental incapacity due to the progressive and irreversible decline in intellectual abilities attributable to dementia is catastrophic. The memory loss and loss of previous acquired skills cause major life disruption and untold difficulties for carers, whether family or paid staff. The National Institute on Aging has noted that dementia is one of the most debilitating disorders of old age and projected that in the general population there will be a tripling of persons affected by dementia over the next 50 years. This condition, as an emerging "compounding disability" among older adults with intellectual disability is a clinical problem which requires more attention as agencies and families see an increase in its prevalence.

Most research indicates that the prevalence of dementia among persons with Down syndrome, a group particularly at-risk of Alzheimer's disease, is significantly higher than in the general population. Some estimates put it at about 60% for adults over age 60. The rate among adults with other etiologies of intellectual disability appears to be more normative. Dementia, as a condition affecting adults with intellectual disabilities, results in a progressive decline in independence and function. In the end it affects all spheres of the person's life.

Concerns have been raised by agencies and families about the impact of dementia (particularly dementia associated with Alzheimer's disease) among older adults with intellectual disabilities and the lack of solid diagnostic and intervention resources. One concern is that there is a lack of a consensus on how to prevent institutional admissions (or re-admissions). Another concern is that there are untested but workable community care models which can blend the best technologies of the Alzheimer's care movement and the field of intellectual disabilities.

Almost all community provider agencies would prefer to avoid referrals to nursing facilities of adults with dementia. As a result, there is also a concern over the lack of information available for administrative decision making as well as comprehensive training packages that would provide staff with needed technical expertise. Agencies are often affected adversely when suspected or diagnosed dementia is identified because of a general lack of information about (1) how agencies can address aiding people with dementia within their programs, (2) options that can be exercised in helping adults with dementia, and (3) accessing sound training packages and materials for staff.

Thus, the purpose of the PCAD project is manifold - to examine prevailing community care practices and decision making when faced with age-associated dementia, to examine models of enhancing staff skills for dementia capable service provision, to review staff time spent with dementia care with an eye on differential cost demands, and to produce materials and training aids to help community provider agencies make informed decisions, enhance staff skills and create dementia capable services.

Who is participating in the project?
The project is working with a number of agencies that have chosen to participate in the project. Agencies cooperate by completing questionnaires about their experiences with dementia, being interviewed about their care practices, and participate in demonstration projects on dementia care.

What are some products and services currently available?
The project has published some of its early results:
1. Janicki, M.P., McCallion, P., & Dalton, A. (2002). Dementia-related care decision-making in group homes for persons with intellectual disabilities. Journal of Gerontological Social Work, 38 (1/2), 179-196.
2. Janicki, M.P., McCallion, P., & Dalton, A.J. (2000). Supporting people with dementia in community settings. In Janicki, M.P. & Ansello, E. (Eds.). Community Supports for Aging Adults with Lifelong Disabilities (pp.381-406). Baltimore: Paul H. Brookes.
3. Janicki, M.P. & Dalton, A.J. (1999). Dementia and public policy considerations. In M. P. Janicki & A.J. Dalton (Eds.), Dementia, Aging, and Intellectual Disabilities: A Handbook. Philadelphia: Brunner-Mazel.

Dementia Care Workshops
The project has also developed a workshop in dementia care (.pdf in new window, content and schedule for workshop) and developing dementia capable services. The workshop is offered in both half-day and day-long versions.

For more information for arranging for the workshop in your community contact the project principal investigator: Dr. Matthew Janicki at

How to contact the project?
Dementia and ID Care Project
University at Albany
Richardson 280
135 Western Avenue
Albany, NY 12222
Telephone: 1 (518) 442-3791
Fax: 1 (518) 442-3823
updated July 3, 2002