Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward

February 26, 2021

Research, Clinical Care, Caregiving, ADRC News

On February 23, the National Academies of Sciences, Engineering, and Medicine (NASEM) released Meeting the Challenge of Caring for Persons Living with Dementia and Their Care Partners and Caregivers: A Way Forward.The report is the culmination of a 3- year collaboration among the National Institute on Aging (NIA), Agency for Healthcare Research and Quality, and NASEM. Based on a rigorous systematic review of the evidence base for effective care and caregiving interventions, the report identifies research gaps and makes recommendations to federal agencies for advancing research and implementing select interventions that follow the guiding principles of dementia care, such as person-centeredness, respect and dignity,  justice, and accessibility.

Our local community played a big role in the report: The UW ADRC's Dr. Eric Larson, MD, senior investigator at Kaiser Permanente Health Research Institute, served as the Chair of the report committee. Ronald Louie, MD, a care partner from Seattle, served as an Advisor to the committee, along with other care partners, caregivers, and people living with dementia.

Here are some highlights from the report:

- The report recommends the real-world implementation and outcome evaluation of collaborative care models, which use multidisciplinary teams to integrate medical and psychosocial approaches to the care of persons living with dementia. An example of this model is Care Ecosystems. The report also finds an evidence base to recommend the use of REACH II, a multi-component caregiver intervention based on an individualized assessment of caregiver and family needs. Reach II and its adaptations involve problem solving, skills management, support groups, provision of information, didactic instruction, and role playing.

- The NIA should prioritize research funding to studies on care interventions that are conducted using the strongest, pragmatic, and informative methodologies. “This is a complex area, and there are contextual factors that can make it difficult to interpret the result of studies,” said report committee member Rebecca Hubbard, PhD, Professor of Biostatistics, University of Pennsylvania. “Bringing in additional qualitative methods allows us to generate richer information about the context, so that when we see an intervention succeeding or failing, we can have a better understanding of why it's working or not working.”

- The report urges the NIA to prioritize inclusive research that includes the full range of populations and communities affected by dementia and support research capable of providing the evidence that will ultimately be needed to make inclusive decisions and implement interventions in the real world.

-Read more highlights