As a follow-up to the successful Aging and End of Life Conference held last December in Washington, DC, AAMR (in cooperation with the RRTCADD) is hosting a teleconference series on Aging and End of Life. Its purpose is to provide information about ways to a) promote and maintain community participation for adults with developmental disabilities in later life and b) provide end of life support.
Many service agencies are seeing the average age of their clientele increase markedly and are now serving more persons who are 50 years of age and older. Given expected physical and cognitive changes associated with aging, concerns are growing about how to appropriately address age-associated pathologies, such as Alzheimer's disease. Alzheimer's and other dementias affect a large number of adults with Down syndrome (about 25% of adults over 40) and a normative number of adults with other etiologies of intellectual disability (about 6% of adults over 60). Many at-risk or affected adults live on their own or with friends, as well as in small community group homes or with their families. How to provide sound and responsive community supports and care is an issue now more frequently debated among agencies faced with an increasing number of such affected adults. This session covers key elements of dementia among adults with intellectual disabilities and examines strategies agencies can employ to adapt their current services to make them “dementia capable.” Specifically covered are the elements of dementia, as well its onset, duration and effect, and techniques for adapting environments and programs. Group home models for continued community living supports (depending on the stage of dementia) will be discussed as will available resources and sources of technical information.
Matthew P. Janicki, Ph.D. is research associate professor of human development at the Institute of Disability and Human Development at the University of Illinois at Chicago, and serves as director for technical assistance for the Rehabilitation Research and Training Center in Aging with Developmental Disabilities at the University. He is currently the principal investigator of a US government-funded project examining how families are aided by community agencies in support of adults with intellectual disabilities affected by Alzheimer’s disease. Formerly, he was director for aging and special populations for the New York State Office of Mental Retardation and Developmental Disabilities. Dr. Janicki was a Joseph P. Kennedy, Jr. Foundation's Public Policy Leadership Fellow, spending a sabbatical year at the National Institute on Aging and the United States Senate. He is the author of numerous books and articles in the area of aging, dementia, public policy, and rehabilitation with regard to people with intellectual and developmental disabilities and has lectured and provided training in aging and intellectual disabilities across the world. Dr. Janicki serves on the Executive Committee of the International Association on the Scientific Study of Intellectual Disabilities as Treasurer and is the editor of the Journal of Policy and Practice in Intellectual Disabilities. Description of Part II of this Session: Competence and Compassion: Essentials of Dementia Support
The emergence of dementia brings new and difficult challenges for the person with lifelong disabilities and his family and friends. This part of the teleconference will address behavioral, cognitive, and emotional changes accompanying dementia and specific strategies to preserve skills, maintain dignity, and enhance life quality as the disease progresses. Unique competencies are required for effective caregiving. With caregiver understanding, compassion, and knowledge, life with dementia can be safe, healthy, productive, and even joyful for the individual and those who are close to him.
Genny Pugh, Director, Black Mountain Center
Genny is the Director of Black Mountain Center, a regional resource center in North Carolina for individuals with intellectual disabilities and individuals with Alzheimer’s Disease. In additional to residential treatment and living arrangements, the center provides evaluation and consultation, technical assistance to service providers and education for caregivers and family members. Genny is a past president of NCAAMR (American Association on Mental Retardation – NC Chapter) and was awarded AAMR Fellow status in 2000. She has served as the President of the Southeastern AAMR Gerontology Division and the national President of the AAMR Administration Division. She has served on the Brain Injury Association of NC Board of Directors. Genny has received the Greater Asheville Excellence in Public Service Award, The NCAAMR Leadership Award, the Southeastern AAMR Leadership Award and in 2001, she received the NC Governor’s Award for Excellence for Public Service.