When did you first become aware of dementia?

For me it was in my late teens when my grandmother was diagnosed with Alzheimer’s disease. There had been many clues along the way, but it wasn’t until my grandfather, who had been grandma’s care partner, got sick himself that suddenly the day-to-day manifestations of Alzheimer’s disease started impacting our lives more directly.

As providers, dementia is impacting your life and work daily. People with dementia live in every setting and access a wide range of services and supports. Therefore, whatever your role and whatever your organization, you meet the needs of people living with dementia. And based on the prevalence, you likely also have a personal friend or family member who is living with a diagnosis of dementia. With no cure in sight, many of us will one day live with dementia ourselves.

It’s Not About Plaques And Tangles

At LeadingAge, we don’t spend our time focusing on plaques, tangles, or tau protein. Instead, our job is to ensure you have the tools necessary to make life better for older adults living with dementia, and those who care about them. Through education, advocacy, and applied research, we are constantly striving to help you improve the lived experience of dementia.

I was invited recently to convene an internal group of LeadingAge team members whose work touches the topic of dementia. It was really challenging to find a time for our first meeting because the group is so large. To me, that’s just one indication of the importance of dementia within our association. In this brief article, I’ll share a few highlights of our current work.

Contributing To National Efforts

Ruth Katz, senior vice president of public policy/advocacy, is serving on the National Academies of Science, Engineering, and Medicine (NASEM) committee on the Decadal Survey of Behavioral and Social Science Research on Alzheimer’s Disease and Alzheimer’s Disease-related Dementias. The name is a mouthful, but its charge is to conduct a 10-year plan for behavioral and social science research related to Alzheimer’s disease and Alzheimer’s disease-related dementias.

Like so many of us, Ruth believes in the importance of including consumers in any work related to dementia.

“One of the really excellent parts of this effort is that there is a caregiver advisory group and a consumer group,” she says. “Both have been set up to informally provide input. We have only met once, but I believe the consumer and caregiver groups will go a long way to keep the whole study and everyone involved grounded.”

Robyn Stone, senior vice president of research at LeadingAge and co-director of the LeadingAge LTSS Center @UMass Boston, is also sharing her insight and expertise at NAESM. Robyn is serving on a committee that will guide the Care Interventions for Individuals with Dementia and Their Caregivers study. In this 2-phase study, the committee will inform the design of an Agency for Healthcare Research and Quality (AHRQ) review of evidence on care-related interventions for people with dementia and their care partners.

The second phase of the study will result in the development of a report on effective care interventions. It’s easy to see how providers are certain to benefit from the outcome of that study. As Robyn says, “it’s exactly the kind of scholarship that LeadingAge members need as they strive to provide the most effective and appropriate services and supports to people living with dementia and their caregivers.”

In the more immediate future, Robyn is also serving on the 2020 steering committee for the National Research Summit on Care, Services, and Supports for Persons with Dementia and Their Caregivers. The first summit of this kind took place 3 years ago, and produced this report. Like the previous event, the 2020 summit aims to improve care for people with dementia through the identification of evidence-based research. The event will take place in March.

Katie Smith Sloan, president and CEO of LeadingAge and executive director of The Global Ageing Network, prioritizes dementia by co-chairing Dementia Friendly America (DFA). DFA is a multi-sector national collaboration striving to equip communities with the tools necessary to support people living with dementia, and their care partners. In the 4 years since its inception, DFA has grown tremendously. And there are lots of opportunities to get involved at a local level.

Current Resources For You

While Ruth and Robyn wade through research and evidence-based interventions at the National Academies and Katie works to build momentum in communities across the country, you can also continue growing your toolkit.

Join the LeadingAge Dementia Services Listserv (soon-to-be the Living Well with Dementia member community) to seek resources and share ideas with colleagues. Attend the Living Well with Dementia education track at 2019 LeadingAge Annual Meeting & EXPO in San Diego. Or check out our online Learning Hub for a growing array of education that’s always at your fingertips.

It’s easy to get overwhelmed by the deluge of bad news related to Alzheimer’s disease and dementia, but hopefully, this article has highlighted some bright spots. While researchers continue the quest for a cure, we will continue to focus on those living with the dementia today and tomorrow.

My teenage self would have never predicted that dementia would influence my life and work for many years to come. It’s safe to say that my thinking about dementia is always evolving, but the heart of the issue remains the same—make life better for those impacted by dementia. Please tell me how we can help you do the same.