Improving Care for Populations Disproportionally Affected by Alzheimer’s Disease and Related Dementias. People with Down Syndrome and Other Intellectual Disabilities


AIDD staff gathered external input regarding people with Down syndrome and other intellectual disabilities who have Alzheimer's disease. AIDD emailed or telephoned major disability organizations and individuals prominent in the field of intellectual disabilities and Down syndrome and asked them to provide input through listening sessions. Invited organizations included: ARC of the United States; National Association of State Directors of Developmental Disability Services (NASDDDS); Association of University Centers on Disabilities (AUCD); National Association of Councils on Developmental Disabilities (NACDD); National Disability Rights Network (NDRN); National Down Syndrome Congress (NDSC); National Down Syndrome Society (NDSS); National Task Group on Developmental Disabilities and Dementia Practices (NTG); Special Olympics; and grantees of the National Institute for Disability Research and Rehabilitation (NIDRR). AIDD staff also contacted the American Bar Association (ABA). AIDD staff sought family member expertise through disability organizations and directly from known family advocates of people with intellectual disabilities because family support is widely recognized as key in the lives of people with disabilities. Several individuals, while responding in their professional capacity as scholar, researcher, practitioner, or other professional role, also identified themselves as family members of an individual with Down syndrome. In addition, AIDD staff sought the expertise of self-advocates with intellectual disability.

Four listening sessions were held with participation ranging from one to 17 people. One of the sessions was a telephone conference, the others occurred face-to-face. The remainder of the input was received through email. The response to request for external input from these experts was robust with 77 responses representing input from across the field.

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