'Aging in Place' Program Helps Disabled Thrive

CHICAGO – A 5-year pilot program that provides collaborative support services for people who have developmental disabilities and dementia is helping to improve their quality of life, according to a presentation at a conference on dementia sponsored by the Alzheimer's Association.

The program, launched in 2006 by the Rochester (N.Y.) chapter of the Alzheimer's Association, has served 122 developmentally disabled people with Alzheimer's disease and other dementias, about half of whom have Down syndrome. Other causes of developmental disability include cerebral palsy and mental retardation unrelated to Down syndrome.

Paula Casselman, who serves as resource director of the chapter, said more than 30% of the participants in the program have shown improvements in their activities of daily living.

Anecdotally, about half those with behavioral disturbances showed improvement as reported by caregivers. In many cases, interactions with peers also improved, Ms. Casselman said.

The program is structured around the “aging in place” model, which keeps individuals within the community, in their familiar surroundings, and close to family and friends for as long as possible. Ms. Casselman added that the model is based on three of the core services of the Alzheimer's Association, including on-site guided education, care consultation, and support (discussion) groups.

Ms. Casselman said masters-level Alzheimer's Association faculty go right into the home or the day facility to meet with the family and staff to educate them about the disease process and particular areas of need, such as simplifying activities or rearranging the environment to make it easier for the person to function.

Education also involves hands-on training in partnership with home care agencies.

“We have seven core courses in Rochester using companions and home health [caregivers] who have had extensive training in dementia care and have undergone background checks,” she said.

Care consultations include regular 6-month reviews of the individualized service plan (ISP) with the interdisciplinary team, development and implementation of an action plan based on staff and peer recommendations, and ongoing oversight of consumers' dementia-specific needs in order to promote aging in place, Ms. Casselman said. She added that the ISP–developed by the Medicaid service provider–profiles the individual and outlines the goals of those taking care of that person and how those goals are being met.

Discussion groups are informal meetings with peers who live with or close to the program participant, Ms. Casselman explained. “It's an opportunity to talk to them and find out how they're affected by having a friend with a developmental disability and AD, because these peers need information and support.”

Life enrichment was added as a fourth element of the Rochester program. It is accomplished using environmental assessments, adaptive furnishings, memory and sensory adaptations, transportation, safety devices, and respite care, Ms. Casselman said.

Caregiver support is emphasized in the Rochester project, because existing programs and staff models were not designed for the unique needs of aging people with developmental disabilities, said Sharon Boyd, senior vice president of the chapter.

Groups interested in creating programs for the developmentally disabled should first establish a relationship with their state developmental disabilities organizations, Ms. Casselman said. Such an approach also helps to garner the support of state legislators and families of the developmentally disabled.

CHICAGO – A 5-year pilot program that provides collaborative support services for people who have developmental disabilities and dementia is helping to improve their quality of life, according to a presentation at a conference on dementia sponsored by the Alzheimer's Association.

The program, launched in 2006 by the Rochester (N.Y.) chapter of the Alzheimer's Association, has served 122 developmentally disabled people with Alzheimer's disease and other dementias, about half of whom have Down syndrome. Other causes of developmental disability include cerebral palsy and mental retardation unrelated to Down syndrome.

Paula Casselman, who serves as resource director of the chapter, said more than 30% of the participants in the program have shown improvements in their activities of daily living.

Anecdotally, about half those with behavioral disturbances showed improvement as reported by caregivers. In many cases, interactions with peers also improved, Ms. Casselman said.

The program is structured around the “aging in place” model, which keeps individuals within the community, in their familiar surroundings, and close to family and friends for as long as possible. Ms. Casselman added that the model is based on three of the core services of the Alzheimer's Association, including on-site guided education, care consultation, and support (discussion) groups.

Ms. Casselman said masters-level Alzheimer's Association faculty go right into the home or the day facility to meet with the family and staff to educate them about the disease process and particular areas of need, such as simplifying activities or rearranging the environment to make it easier for the person to function.

Education also involves hands-on training in partnership with home care agencies.

“We have seven core courses in Rochester using companions and home health [caregivers] who have had extensive training in dementia care and have undergone background checks,” she said.

Care consultations include regular 6-month reviews of the individualized service plan (ISP) with the interdisciplinary team, development and implementation of an action plan based on staff and peer recommendations, and ongoing oversight of consumers' dementia-specific needs in order to promote aging in place, Ms. Casselman said. She added that the ISP–developed by the Medicaid service provider–profiles the individual and outlines the goals of those taking care of that person and how those goals are being met.

Discussion groups are informal meetings with peers who live with or close to the program participant, Ms. Casselman explained. “It's an opportunity to talk to them and find out how they're affected by having a friend with a developmental disability and AD, because these peers need information and support.”

Life enrichment was added as a fourth element of the Rochester program. It is accomplished using environmental assessments, adaptive furnishings, memory and sensory adaptations, transportation, safety devices, and respite care, Ms. Casselman said.

Caregiver support is emphasized in the Rochester project, because existing programs and staff models were not designed for the unique needs of aging people with developmental disabilities, said Sharon Boyd, senior vice president of the chapter.

Groups interested in creating programs for the developmentally disabled should first establish a relationship with their state developmental disabilities organizations, Ms. Casselman said. Such an approach also helps to garner the support of state legislators and families of the developmentally disabled.

CHICAGO – A 5-year pilot program that provides collaborative support services for people who have developmental disabilities and dementia is helping to improve their quality of life, according to a presentation at a conference on dementia sponsored by the Alzheimer's Association.

The program, launched in 2006 by the Rochester (N.Y.) chapter of the Alzheimer's Association, has served 122 developmentally disabled people with Alzheimer's disease and other dementias, about half of whom have Down syndrome. Other causes of developmental disability include cerebral palsy and mental retardation unrelated to Down syndrome.

Paula Casselman, who serves as resource director of the chapter, said more than 30% of the participants in the program have shown improvements in their activities of daily living.

Anecdotally, about half those with behavioral disturbances showed improvement as reported by caregivers. In many cases, interactions with peers also improved, Ms. Casselman said.

The program is structured around the “aging in place” model, which keeps individuals within the community, in their familiar surroundings, and close to family and friends for as long as possible. Ms. Casselman added that the model is based on three of the core services of the Alzheimer's Association, including on-site guided education, care consultation, and support (discussion) groups.

Ms. Casselman said masters-level Alzheimer's Association faculty go right into the home or the day facility to meet with the family and staff to educate them about the disease process and particular areas of need, such as simplifying activities or rearranging the environment to make it easier for the person to function.

Education also involves hands-on training in partnership with home care agencies.

“We have seven core courses in Rochester using companions and home health [caregivers] who have had extensive training in dementia care and have undergone background checks,” she said.

Care consultations include regular 6-month reviews of the individualized service plan (ISP) with the interdisciplinary team, development and implementation of an action plan based on staff and peer recommendations, and ongoing oversight of consumers' dementia-specific needs in order to promote aging in place, Ms. Casselman said. She added that the ISP–developed by the Medicaid service provider–profiles the individual and outlines the goals of those taking care of that person and how those goals are being met.

Discussion groups are informal meetings with peers who live with or close to the program participant, Ms. Casselman explained. “It's an opportunity to talk to them and find out how they're affected by having a friend with a developmental disability and AD, because these peers need information and support.”

Life enrichment was added as a fourth element of the Rochester program. It is accomplished using environmental assessments, adaptive furnishings, memory and sensory adaptations, transportation, safety devices, and respite care, Ms. Casselman said.

Caregiver support is emphasized in the Rochester project, because existing programs and staff models were not designed for the unique needs of aging people with developmental disabilities, said Sharon Boyd, senior vice president of the chapter.

Groups interested in creating programs for the developmentally disabled should first establish a relationship with their state developmental disabilities organizations, Ms. Casselman said. Such an approach also helps to garner the support of state legislators and families of the developmentally disabled.