Monday, January 28, 2019
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Care Interventions for Individuals with Dementia and Their Caregivers: Reviewing the Evidence
Melinda Kelley, Ph.D.
Director, Office of Legislation, Policy, and International Activities
National Institute on Aging
Background
- October 2017: Research Summit on Dementia Care -- Building Evidence for Services and Supports
- Yielded 58 main recommendations for care/caregiving
- NIA will be following up on research-related recommendations
- Research on care/caregiving in the Alzheimer's and related dementias field is expanding.
- Some programs to improve care and caregiving are already being disseminated and adapted (e.g., REACH).
- A rigorous, independent review of which care/caregiving-related interventions are effective and ready for widespread dissemination is needed.
- Overall goal of this project:
- Take stock of the current state of knowledge and inform decision making about which care interventions for individuals with dementia and their caregivers are ready for dissemination and implementation on a broad scale.
A Collaborative Effort
- Agency for Healthcare Research and Quality Evidence-based Practice Centers: Systematic Evidence Review
- National Academies Expert Committee: Development of Recommendations
- NIA: Next steps
How will the recommendations inform the government's next steps?
- NIA's own communications about dementia care/caregiving
- NIA's future research initiative planning
- NIA's collaborations with other federal agencies
- Examples of relevant CDC HBI Road Map actions:
- E-7: Improve access to and use of evidence-informed interventions, services, and supports for people with dementia and their caregivers to enhance their health, well-being, and independence.
- P-1: Promote the use of effective interventions and best practices to protect brain health, address cognitive impairment, and help meet the needs of caregivers for people with dementia.
- https://www.cdc.gov/aging/healthybrain/roadmap.htm
Why engage two independent organizations?
- AHRQ offers a highly-refined systematic evidence review process that has been trusted by governmental organizations for its comprehensiveness and independence.
- The NAM offers an external, independent committee that can consider:
- The EPC's findings on our current state of knowledge;
- The EPC's findings in a larger context (of ongoing research, etc.); and
- Whether observational studies, expert opinion, and other evidence considered in the review are strong enough to justify specific research priorities, even if not yet enough to justify dissemination & implementation on a broad scale.
- The NAM also has well-established conflict of interest guidelines that will enable experts in the field to participate on the committee, without compromising its objectivity.
Areas of Focus
- Alzheimer's plus FTD, LBD, and vascular cognitive impairment/dementia
- Non-pharmacological approaches
- Outcomes for individuals living with these dementias and outcomes for caregivers -- including health, quality of life, and utilization of healthcare services
- Paid and unpaid caregivers
- Multiple diverse settings
Opportunities for Broad Input
- Input from multiple federal agencies received on:
- NAM committee expertise
- NAM committee nominations
- The EPC's preliminary topic refinement plan
- Input from the public received on the topic refinement plan
- All National Academies meetings have a public (open) session