Table 1.
Caregiving and intellectual and developmental disabilities (IDDs) and dementia: Recommendations to the NIH Summit on Dementia Care and Services Research
| Recommendation | Who could do it? |
|---|---|
| 1. Better integrate community education, outreach, research, and supports for caregivers of older adults and caregivers of adults with IDDs and dementia to capitalize on the strengths of both programs and promote inclusive practices. | |
| a) Include people with IDDs and their supporters in both generic aging and dementia studies | Administration on Community Living (ACL); National Institutes of Health (NIH); foundations |
| b) Document the cost of family support programs and how they benefit society and reduce overall cost of nonfamily care | ACL; NIH; foundations |
| c) Acknowledge positive aspects of caregiving | ACL; Area Agencies on Aging (AAA); national provider groups and associations |
| d) Incorporate concepts such as future planning, person-centered planning, and supported decision-making in research and practice | ACL; AAA; national provider groups, state developmental disabilities authorities |
| 2. Increase research and community programming to support people with IDDs and dementia living in group home settings. | |
| a) Examine the benefits of dementia capable communities “Dementia friendly America” with respect to aiding families caring at home for adults with IDDs | ACL; Assistant Secretary for Planning and Evaluation (ASPE) |
| b) Develop and test models of residential supports that are dementia capable for both adults with IDDs and other older adults with dementia | NIH; ACL; Centers for Medicare and Medicaid Services (CMS) |
| c) Provide sufficient training and financial supports for dementia capable homes | CMS; AAA; state developmental disabilities authorities |
| d) Examine the degree of family caregiver supports associated with living out-of-home dementia care of adults with IDDs | ACL |
| 3. Acknowledge and respect the diversity of family values and caregiving practices. | |
| a) Develop linguistic and cultural sensitivity among providers based on ethnic and cultural values and practices | ACL; national provider groups; professional organizations; caregiver associations |
| b) Consider the special needs of families living in poverty and families not identified by the service system | State Units on Aging (SUAs); state developmental disabilities authorities |
| c) Develop methods of reaching families in rural areas and those in linguistic and/or ethnic geographic groupings | ACL; CMS |
| 4. Increase early screening and public awareness of dementia and other aging-related issues in people with IDDs and their caregivers. | |
| a) Increase training for clinicians and widespread dissemination of diagnostic instruments developed specifically for people with IDDs | CMS; Health Resources and Services Administration (HRSA); American Psychological Association; American Association on Intellectual and Developmental Disabilities; Geriatric Workforce Education Programs (GWEPs); National Task Group on Intellectual Disabilities and Dementia Practices |
| b) Help families and other persons who provide support recognize the signs of dementia in people with IDDs | ACL; GWEPS; AAA; SUAs; state developmental disabilities authorities |
| c) Adopt an early detection and screening instrument for persons with IDDs as part of the annual wellness visit under the Affordable Care Act. | CMS |
| 5. Focus on the integration of the aging and developmental disability networks to provide quality continuous care. | |
| a) Examine the impact of the “Perfect Storm”—an aging population, more numbers of persons with dementia, and diminution of numbers of care workers (via reductions due to changing policies on immigration) | NIH; ACL; Centers for Disease Control and Prevention (CDC) |
| b) Fund more research on best practices that apply to dementia caregiving including family support models, relationship-based care, and supported decision-making | NIH; ACL; foundations |
| c) Examine how more cross-cutting collaborations can occur among the aging, dementia care, and disability sectors to address the needs of caregivers of persons with IDDs and dementia | ACL; SUAs; state developmental disabilities authorities |