Alzheimer’s disease and related dementias affects a significant number of adults with intellectual disability (ID), in particular those with Down syndrome. Many affected adults live in small community group homes or with their families. How to provide sound and responsive community care is becoming a challenge for agencies faced with an increasing number of affected adults.

It is estimated that some four million adults are currently affected by Alzheimers disease and countless more by other dementias (such as vascular, Parkinsonian, Lewy body, etc.). These numbers will increase by threefold within the next 20 years. Since this growth is mirrored in the population of adults with intellectual disabilities (ID), expectations are that this same trend will be observed. Indeed, it has been estimated that in the United States that there may be 140,000 older adults with intellectual disabilities (including Down syndrome) possibly affected by Alzheimers disease and related disorders, and that this number too will grow by threefold within the next 20 years (Janicki & Dalton, 2000). Further, due to concerns raised over Alzheimers disease as an emerging public health issue, the lack of adequate diagnostic resources and care management alternatives are problems of growing importance.

The New York State Developmental Disabilities Council has sought to address these pressing needs through:

  1. Collaboration with state agencies, such as The New York State Office of Mental Retardation and Developmental Disabilities (http://www.omr.state.ny.us/) and the New York State Office for the Aging, particularly its caregiver assistance programs (http://aging.state.ny.us/caring/index.htm).
  2. Funding the development of geriatric clinics in Rochester and Staten Island at the Institute for Basic Research (http://www.omr.state.ny.us/ddso/ibr/resource/hp_nyrgibr.jsp#toc)
  3. Providing teaching resources through it's own website (http://www.ddpc.state.ny.us/) and the creation of this resource, the Intellectual Disabilities and Dementia web site.

Center for Excellence in Agng Services