A new report from the National Academies of Sciences, Engineering, and Medicine presents a framework for future research and action around dementia care. LTSS Center Co-Director Robyn Stone served on the committee that undertook the study.
The current body of evidence on dementia care does not reflect the experiences of diverse populations, including people of different races, ethnicities, ages, genders, sexual orientations, and abilities, says a new study from the National Academies of Sciences, Engineering, and Medicine.
The study—undertaken by the National Academies’ Committee on Care Interventions for Individuals with Dementia and Their Caregivers—was sponsored by the National Institute on Aging. Robyn Stone, co-director of the LeadingAge LTSS Center @UMass Boston, is a member of the committee.
Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward assesses the quality of the existing evidence around care for people living with dementia and their caregivers and recommends interventions for broad dissemination and implementation. It also provides a blueprint to guide future research and actions toward better dementia care.
“This has been a fantastic experience for me,” said Stone during a Feb. 23 webinar to release the report. “Because of the complexity we face in terms of thinking about how we provide good services care and support to persons living with dementia … we really felt that it was important to establish a framework for thinking about care interventions. We had an incredible group of people working through this.”
RESEARCH LIMITATIONS
There are between 3.7 million and 5.8 million people living with dementia in the United States, according to recent estimates. Many of these individuals desire support to help them live with purpose, maintain meaningful relationships, continue the activities they enjoy, and remain independent for as long as possible. But they need care, services, and supports that reflect their values and preferences, build on their strengths and abilities, and promote well-being, says the report.
Existing research on dementia care interventions has several limitations, according to the report:
- Research mainly consists of short-term studies with small sample sizes, making it challenging to determine which interventions are effective.
- Studies tend to focus on interventions delivered at the individual level. More research is needed on interventions at the community, policy, and societal levels.
- Funders of research should ensure a balance of short-term and long-term studies, and assess interventions in real-world settings where people receive care, including the home and long-term care settings.
MOVING THE FIELD FORWARD
The committee found two types of interventions that are supported by low-strength evidence of benefit, based on a systematic review by the Agency for Healthcare Research and Quality. These include:
- Collaborative care models that integrate medical and psychosocial care. “These models use multidisciplinary teams to integrate medical, social care, and psychosocial approaches to delivering services and supports to persons living with dementia as well as their family caregivers and care partners,” said Stone. “They actually had some effect on a number of really important outcomes.”
- Resources for Enhancing Alzheimer’s Caregiver Health (REACH) II, an intervention aimed at supporting family caregivers. “This is a very multifaceted intervention that includes everything from support groups to stress management, to information and education, to role playing,” explained Stone “(It) actually improved care partner and caregiver depression.”
Agencies within the U.S. Department of Health and Human Services should work with state agencies, community organizations, and health care systems to implement these interventions with ongoing evaluation to expand the evidence base, the report recommends. These efforts should include work to identify workforce needs, test payment models, and ensure adaptations for specific racial and ethnic groups, LGBTQ populations, and low-resource settings, including rural and tribal areas.
The report also highlights the need to:
- Develop interventions that focus on training and supporting paid direct care workers.
- Generate more high-quality evidence on interventions such as late-stage care interventions, respite care, and social supports, like peer groups for people living with dementia and their caregivers.
- Prioritize research that promotes equity, diversity, and inclusion to reflect the experiences of a range of populations and communities.
- Consider key factors, such as space and workforce capabilities, to assess the real-world effectiveness of various interventions.