RCPA - Rehabilitation and Community Providers Association


Alzheimer’s Committee Hosts Public Hearing
August 27, 2013

The Pennsylvania Alzheimer’s Disease Planning held a public hearing in State College to allow stakeholders to share recommendations to address the needs of persons with Alzheimer’s disease and related dementias. Presenting at this meeting regarding the needs of those with intellectual or developmental disabilities (IDD) with Alzheimer’s or dementia were Linda Drummond, RCPA; and Cindy Mayes and Amy Bennett, The Arc of Centre County.

Drummond shared information regarding the 48,000 individuals with IDD currently served by providers. More than 27,000 are age 30 or older. Alzheimer’s and dementia can begin as early as late 30s or early 40s for individuals with Down syndrome. These people also often have premature aging, including physical changes up to 20 – 30 years before others in the general population. Alzheimer’s appears to be more common in those with Down syndrome than in the rest of the population. It is estimated that up to 25 percent of those with Down syndrome over the age of 35 show signs and symptoms of Alzheimer’s or dementia, makings these conditions three – five times greater than in the general population.  

Mayes shared that approximately 18 months ago several individuals served by The Arc of Centre County for many years were diagnosed with Alzheimer’s disease, presenting a significant challenge to the agency.  Although skilled in working with persons with IDD the agency did not have experience in supporting persons with a diagnosis of Alzheimer’s.  The Arc of Centre County learned that serving these individuals would require a new initiative. It converted an existing licensed home to specifically serve individuals with this diagnosis. The Centre County Mental Health/Intellectual Disability Office was very supportive of the initiative. With this support, the agency could pursue program development, identifying resources, and securing funding for specialized training. The Centre County United Way pledged $6,000 for this initial step.  Resource people included Dr. Daniel George, assistant professor of medical humanities, Pennsylvania State University; Kelly Dombrowski, director, Schenectady Arc;  Dr. Kathy Bishop, instructor and researcher, Rochester University; and Gretchen Moore-Simons, Alzheimer’s Association of Northeast New York.  The Arc of Centre County garnered knowledge specific to supporting persons with Alzheimer’s disease.  A significant amount of materials and labor were discounted by area contractors and vendors for this project – “Forever Home.”

Forever Home is an Office of Developmental Programs licensed community home, with environmental and programmatic design that showcases the current practices of care and support to persons with an intellectual disability and Alzheimer’s.  Three individuals currently reside at the home and two others have recently been diagnosed with Alzheimer’s. These people represent 20 percent of those served in residential settings by The Arc of Centre County. They range in age from 40s – 60s.  

Many environmental modifications were made to Forever Home.  Rooms were painted to create visual contrast, light switches are rocker switches, doors have lever handles, and glare-free smoothing lights were added to most rooms. Pictures were placed on doors to identify rooms. These changes assist in creating a more independent, safe environment and provide less confusion to residents.  The Rochester Environmental and Sensory Processing Awareness Tool was completed for each individual. It assesses how the individual processes and interprets the environment and how the environment affects mood, functioning, and activities of daily living (ADLs).  Dementia support plans were put into place for each person addressing environmental and care concerns. Plans provide caregivers a positive and consistent approach to supporting the well-being and emotional state of the individual.  Other programming additions were life story books, learning calendars, and Fur-Real pets.  The agency is looking at how to bring the community to the Forever Home. Peak times of activity are early morning through mid-afternoon. Bringing the community into the home through things such as physical, art, and music therapies can help the individual’s transition throughout the day without having to leave home in the evenings, which is often a time of high confusion for them.  

Providers interested in sharing experiences or recommendations to be included in the Alzheimer’s Planning Committee’s information to the governor may do so in person September 16 in Clarion or September 17 in Pittsburgh. To reserve a time or to submit written comments submit email to alzstateplan@pa.gov.

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