Care and Caregiver Support Studies
NIH is committed to enabling better outcomes for people with Alzheimer’s and related dementias, as well as for their caregivers. NIH-supported efforts have led to improved quality of care and quality of life for those living with these conditions and the development of resources designed to help ease burdens on care providers. Our efforts to encourage broad sharing of data and resources include raising awareness about evidence-based social and behavioral interventions.
In 2019, NIA expanded its network of Roybal Centers for Translational Research in the Behavioral and Social Sciences of Aging to focus on the development of behavioral interventions for dementia care providers, both at the individual and health care system levels. The Roybal network, which was established in 1993, is designed to translate findings from basic behavioral and social research into evidence-based interventions and programs that can be shared and implemented in the community. The four new centers, called collectively the Roybal Centers for Translational Research on Dementia Care Provider Support, will develop and pilot test dementia-related interventions and their related materials for feasibility, acceptability, and efficacy. For example, at the new Roybal Center for Palliative Care in Dementia, the first planned pilot studies will focus on better end-of-life planning, including testing an online advance care planning tool tailored for use with people with dementia in long-term care facilities. The ultimate goal is to deliver evidence-based behavioral interventions for use in communities nationwide.
Also in 2019, NIH funded a new effort called the Imbedded Pragmatic Alzheimer’s disease and related dementias (AD/ADRD) Clinical Trials (IMPACT) Collaboratory to meet the urgent public health need to deliver high quality, evidence-based care to people living with dementias and their caregivers. Through this effort, researchers will develop and test care interventions in real-world settings such as hospitals, assisted living facilities, nursing homes, and adult day care centers. In general, a “pragmatic clinical trial” means participants are enrolled as part of a real- world setting, rather than selected from a broader community based on narrowly defined criteria. The IMPACT project will bolster the nation’s capacity to conduct pragmatic clinical trials of interventions, embedded within health care systems, for people living with dementia and their caregivers. IMPACT supports pilot projects that have thepotential to inform the design of larger scale pragmatic trials.
Studies of Dementia Costs
The costs of dementia care and the challenges families face as caregivers continue to be a priority area of research. In early 2020, researchers reported results from two notable NIH-supported analyses:
- A recent analysis of Medicare and Medicaid data shows that the costs of health care for people with dementia are much higher than for those without dementia, and the burden of those higher costs falls disproportionately on people with dementia and their families. The authors also noted that overall costs were roughly equal for people with dementia regardless of where they lived — either in a nursing home or in the community. However, community dwellers and their families paid most of the total cost, compared to less than one-half of the costs if the person with dementia lived in a nursing home.
- Researchers used data from the 2015 National Health and Aging Trends Study, an NIH-funded study of Medicare recipients age 65 and older, to show that only one-quarter of people with dementia and about one-half of those with advanced dementia living in the community received paid care. Even with paid care, family caregivers provided more than one-half of reported care hours. Men, the unmarried, those with Medicaid, and those requiring more help with daily activities had the highest likelihood of receiving paid care. People in the middle-income range were less likely to receive paid care.
Evidence Review by Agency for Healthcare Research and Quality
In 2018, NIA launched a collaboration with the Agency for Healthcare Research and Quality (AHRQ) and the National Academies of Sciences, Engineering, and Medicine (NASEM) to review the evidence on dementia care and caregiving interventions. NIA asked AHRQ to conduct a rigorous systematic review to evaluate the evidence and to assess the potential for broad dissemination and implementation of any efficacious findings.
The draft review, released in March 2020, identified low-strength evidence for specific categories of interventions and outcomes. Specifically, the review found that intensive multicomponent interventions may improve informal caregiver depression and quality of life. The findings also suggest that collaborative care models may improve both quality of life for people living with dementia and system-level markers, such as reduction in emergency department visits. Still, there is insufficient evidence for drawing conclusions about the effects of all other interventions assessed in this study.
In parallel, NIA asked NASEM to establish an expert committee to assess the findings of the AHRQ review as well as other relevant sources, to develop recommendations on the readiness of relevant interventions for broad dissemination and implementation, and to identify research gaps. The committee report will be released in early 2021.
The findings from these efforts will inform NIA’s decisions for future research investments and guide research projects that are already underway.
For a more in-depth look at the research implementation milestones in this area, including progress and accomplishments, visit www.nia.nih.gov/research/milestones/care-caregiver-support.
Find a list of references for this section in the PDF version.