June is Alzheimer’s and Brain Awareness Month, organized by the Alzheimer’s Association. Alzheimer’s disease is a degenerative brain disease and the most common form of dementia. Alzheimer’s and other forms of dementia cause a decline in cognitive abilities like memory and thinking that is severe enough to impact daily living and independence. In most people, the symptoms of Alzheimer’s and other dementia appear in their mid-60s. People with intellectual and developmental disabilities (IDD) are living much longer, thanks to advances in health care and community living. As they approach their 50s and 60s, they can also develop some form of dementia. Recent research has turned to the intersection of aging and IDD to understand the unique challenges people with IDD and their caregivers face. Here are a few selections from the NARIC collection, including research from the NIDILRR grantee community.
The intersection of intellectual disability and dementia: Report of the international summit on intellectual disability and dementia. Gerontologist, 59(3), Pgs. 411-419. Article summarizes the findings and recommendations of the International Summit on Intellectual Disability and Dementia, held in Glasgow, Scotland in 2016. The summit drew individuals and representatives of numerous international and national organizations and universities with a stake in issues affecting adults with intellectual disability (ID) affected by dementia. A discussion-based consensus process was used to examine and produce a series of topical reports examining three main conceptual areas: (1) human rights and personal resources, (2) individualized services and clinical supports, and (3) advocacy, public impact, and family caregiver issues. (Rehabilitation Research and Training Center on Developmental Disabilities and Health)
The search for biomarkers of Alzheimer’s disease in Down syndrome. American Journal on Intellectual and Developmental Disabilities – AJIDD, 125(2), Pgs. 97-99. Article offers a brief overview of the current knowledge of Alzheimer’s disease (AD) in people with Down syndrome (DS). In addition, information on a multicenter longitudinal study of biomarkers of AD in adults with DS is provided. Adults with DS are at high risk for AD, with most individuals developing clinical dementia by their late 60s. This increased risk for AD has been attributed, at least in part, to triplication and overexpression of the gene for amyloid precursor protein on chromosome 21, leading to elevated levels of amyloid beta peptides.
Dying well with an intellectual disability and dementia. Journal of Dementia Care, 25(4), Pgs. 22-25. Article examines the practice challenges that arise when someone with an intellectual disability (ID) also has dementia. Three areas are discussed where the added complexity of advanced dementia warrants particular attention around end-of-life services in people with ID: ascertainment of advanced stage of dementia, place of care, and active support. While many needs of adults with ID at the end of life are the same as for others, some critical differences are highlighted.
Why do we need national guidelines for adults with intellectual disability and dementia? Alzheimer’s and Dementia: Diagnosis, Assessment and Disease Monitoring, 1(3), Pgs. 325-327. Article addresses the need for special guidelines for the care and support of people with intellectual disabilities (ID) who are affected by dementia. The authors argue that there is a medical and social benefit for a set of unified and comprehensive guidelines related to ID and dementia that transcend national interests and practices and provide consensus on internationally accepted practice. (Rehabilitation Research and Training center on Developmental Disabilities and Health)
Mediation between staff and elderly persons with intellectual disability with Alzheimer disease as a means of enhancing their daily functioning. Education and Training in Autism and Developmental Disabilities, 46(1), Pgs. 106-115. Article presents the Mediational Intervention for Sensitizing Caregivers (MISC) model, a new way of mediation between staff and elderly adults with intellectual disability (ID) and Alzheimer type dementia (AD). The MISC was adopted for interactions between staff and adults with ID and AD based on observations of interactions between staff and adults with ID. The overall objective is to help caregivers and direct staff relate to their dependents in a way that will enhance their cognitive, emotional, and behavioral functioning.
In addition, you may be interested in these publications:
- Improving support for older adults with I/DD who have dementia and their families. Factsheet from the Rehabilitation Research and Training Center of Family Support.
- Guidelines for structuring community care and supports for people with intellectual disabilities affected by dementia. Practice guidelines developed by the National Task Group on Intellectual Disabilities and Dementia Practices.
- Impact Feature Issue on Aging and People with IDD.
For people with IDD and their families, the National Task Group developed a resource guide that explains the basics of dementia, caregiving aids, and sources of help. It and a collection of other resources from around the IDD community are available at https://www.the-ntg.org/for-family-caregivers.