A new federal report offers 694 recommendations for conducting research to advance care and services for people living with dementia and their families. Those recommendations can also guide providers of aging services as they design and implement programs for this population, says Kirsten Jacobs, director of dementia and wellness education at LeadingAge.

The recommendations are included in a May 2018 report on the National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers. Several LeadingAge members served on the summit’s Service Provider Stakeholder Group.

Summit recommendations span 12 themes designed to guide research investments by public and private stakeholders in the field of care, services, and supports for people living with dementia. Five of those themes are particularly relevant to LeadingAge members, says Jacobs.

Developing Evidence-Based Programs and Services

Providers of long-term services and supports (LTSS) are cited in several recommendations calling for the development of research methods that will result in evidence-based programs and services for people living with dementia. For example, the report calls for:

• Involving providers in the identification of dementia research priorities and relevant research outcomes, and
• Speeding up dissemination of effective dementia programs and services to real-world settings.

“These recommendations will ultimately have a direct effect on improving the care, services, and supports for people living with dementia,” says Jacobs. “The recommendations acknowledge that providers can be important partners in achieving this goal.”

Clinical Approaches and the Lived Experience

The summit report underscores the heterogeneity of persons living with dementia, caregivers, and caregiving situations. It calls for more research to identify “what works for which persons living with dementia and caregivers under what circumstances and in what settings.” Specific recommendations include calls to:

• Understand what outcomes are important to persons living with dementia,
• Gain consensus on what constitutes person-centered care, and
• Improve measures of quality of care and quality of life.

“These recommendations impact the lived experience of people living with dementia in our care settings,” says Jacobs. “They beautifully state the need to make sure people living with dementia are central to our thinking as we design services and supports.”

Comprehensive Models for Dementia Care, Services, and Supports

People living with dementia and their caregivers often encounter difficulties, frustration, and negative health outcomes when they seek services and supports, according to the report. The summit report calls for more research on comprehensive models of care that could help reduce those difficulties.

“Our members are already working in their communities to provide many of the comprehensive services mentioned in the report,” says Jacobs. “Those members could benefit from the recommendations to improve how we measure the effectiveness of these services.”

Processes of Care for Persons with Dementia

People live with dementia in senior housing communities, retirement communities, and group homes, in addition to private homes, assisted living communities, and nursing homes, says the report. Therefore, research studies should be designed to improve our understanding of:

• The needs of people living in all settings,
• How to improve transitions from one type of living place to another, and
• How to balance issues related to autonomy, independence, and choice.

“These recommendations talk about the importance of physical and social environments,” says Jacobs. “They also shine a spotlight on the questions of ‘integration vs. segregation’ and ‘risk vs. autonomy’ that many of our members are grappling with right now.”

Ensuring an Adequate and Qualified Workforce

Summit participants urged researchers to consider how workforce issues will affect innovations in care, services, and supports for persons with dementia and their caregivers. The recommendations include calls for research on:

• Recruitment and retention of a strong dementia care workforce,
• Training that will increase knowledge and skills for dementia care, and
• The role of the interdisciplinary team.

“We know that workforce issues represent one of the greatest challenges facing providers,” says Jacobs. “Meeting the needs of people with dementia adds a whole new intensity to those challenges. Clearly, none of the innovative approaches described in this report will be implemented unless we have a strong workforce.”

Next Steps

The National Research Summit on Care, Services, and Supports for Persons with Dementia and their Caregivers was convened by the Advisory Council on Alzheimer’s Research, Care, and Services. The council was established by Congress in 2011 to oversee annual updates to the National Plan to Address Alzheimer’s Disease.

Authors of the summit report suggest that its recommendations be used to build a national research framework that would feature milestones for tracking progress over time. But Jacobs suggests that LeadingAge members interested in taking the report’s recommendations “to the next level” could start by establishing research partnerships with local universities or medical entities.

“These organizations are often looking for providers to help them evaluate new models of services and supports for people living with dementia,” she says. “This is a place where our members can be leaders in developing the strong evidence base that we need for this field.”