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Information
about the Preparing Community Agencies for Adults Affected by Dementia
Project (PCAD Project)
|
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
DiAnn Baxely, MAR. -University at Albany
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 janickimp@aol.com.
| 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 E/mail dementcare@aol.com updated July 3, 2002 |