Dementia care benefits from listening to patient and family perspectives

KPWHRI Research Associate Caitlin Morrison, MPH, describes how our recent ‘Dementia Think Tank’ connected people with a passion for excellent care

Listening and responding to the needs of our members is a core principle of our Learning Health System (LHS) program here at Kaiser Permanente Washington. As part of our LHS work, I recently led the organization of a “Dementia Think Tank” where I had the opportunity to hear firsthand from one of our members about what it’s like when a loved one is diagnosed with dementia.

With no cure in sight, a dementia diagnosis often leads to feelings of helplessness for both patients and their families. And as the baby boomer generation ages, this challenge will grow — rapidly. Worldwide, about 47 million people have dementia, and this number is projected to increase to 132 million by 2050. While health care organizations search for the best way to care for them, many patients and their families are already struggling to find the care they need.

As a researcher at Kaiser Permanente Washington Health Research Institute, I want to figure out how our dementia researchers can help care delivery implement evidence-based solutions to provide the best possible care to our members. The good news is that I’ve observed an amazing amount of passion and dedication around dementia care across Kaiser Permanente Washington.

This passion was on full display at our recent Dementia Think Tank — a special event that brought together primary care providers, researchers, specialists, and health plan leaders to identify specific ways we can collaborate to better meet the needs of our members with dementia and their families.

Connecting the dots between care delivery and research

I became interested in this topic when I was working on an evaluation in the care delivery system. It started when I met a team at the Northgate clinic who was looking at electronic medical records for potential clues around cognitive decline. Immediately after meeting with that team, I came back to the Research Institute and found out one of our health services investigators, Dr. Rob Penfold, had just submitted a grant on the same topic. I wanted to connect Dr. Penfold with care delivery so he could share his knowledge of the field and aid the care delivery team in their charge.

This is just one example. From my time working both in the clinic and at the Institute, I have found that there are many people across Kaiser Permanente Washington who are passionate about finding better ways to care for people with dementia. I wondered what it might be like to put all of that passion in one room and look for opportunities for alignment and improvement.

Keeping our members at the center of our Learning Health System

That’s where the LHS program comes in. The program is committed to bringing better health and better care to our members by connecting care delivery and research — and by continually learning from what happens every day at the point of care. So as part of LHS work, we organized the Dementia Think Tank as a way to bring people together to share ideas and to hear directly from a member about their experience of care. The event was co-sponsored by the Kaiser Permanente Washington Innovation Team and facilitated by the Practice and Leadership Development group at Washington Permanente Medical Group.

It was a special event because it allowed for people to make new connections across different parts of our organization and for providers who provide different aspects of a patient’s care to meet face-to-face. Having a member at the event kept us focused on what our members need and allowed us to keep them at the center of every conversation.

This is just the beginning for this group. There is more to be defined, but it feels like we are on the right path and making the right connections. The solution will be system wide, so we are having the conversation system wide. Having all of these engaged people in the room gave me the feeling that we’re on the verge of something remarkable.

by Caitlin Morrison, MPH, Research Associate, Kaiser Permanente Washington Health Research Institute

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