Next-generation dementia care and research includes the voices of those living with the disease. Professors Kali Thomas and Jill Harrison find inclusive research improves results.
THROUGH DAILY VISITS, Derek Washington learned his mother, Dorothy Washington, was no longer cooking. He brought microwave meals for her dinner, but she didn’t eat them. When she had trouble accurately writing checks, he took over her finances. A medical evaluation confirmed her steep memory loss. Once COVID-19 surfaced, he moved from his home a few miles away to hers in St. Petersburg, Florida, to better assist her. When he registered the 84-year-old retired social worker for delivered meals, he learned researchers were seeking input on the needs of people living with dementia, like his mother.
This was his path to participating in a Brown University research project. In January, the 60-year-old African-American artist and full-time care partner became a stakeholder influencing research conducted by Kali Thomas Ph.D., associate professor of health services, policy and practice in the School of Public Health and health science specialist at the Providence VA Medical Center.
As members of a stakeholder advisory panel, Washington and other caregivers, people living with dementia (PLWD), clinical social workers, program administrators, and drivers provide feedback for the pilot phase of a pragmatic randomized clinical trial funded by the National Institute of Aging (NIA). The connection to Thomas is facilitated by the NIA IMPACT Collaboratory at Brown, as she and her partner, Meals on Wheels America, test which type of home-delivered meals—daily hot meals or frozen meals delivered every two weeks—best delay nursing home placement for food-insecure persons with dementia.
Researchers at Brown and beyond are seeking stakeholder input, but outreach to people living with dementia is a newer practice—one influencing the next-generation standards of dementia research and care. “There is increasing recognition and awareness that people living with dementia can meaningfully contribute to shaping, interpreting, contextualizing and disseminating research findings,” Thomas says.
There is increasing recognition and awareness that people living with dementia can meaningfully contribute to shaping, interpreting, contextualizing and disseminating research findings.
Kali Thomas, associate professor of health services, policy and practice
Relationship broker
The IMPACT Collaboratory was created through a NIA grant to Brown and Boston-based Hebrew SeniorLife—the largest federal award in Brown’s history—to lead a nationwide effort to improve health care and quality of life for people living with Alzheimer’s disease and related dementias and their caregivers. The research incubator, now in its third year of a five-year grant, funds and provides expert assistance to up to 40 pilot trials designed to test non-drug, care-based interventions with PLWD and to develop and disseminate best practices for implementing and evaluating interventions.
The demographics of this population come into focus through a 2021 Population Reference Bureau summary of NIA-funded dementia research: Up to 6 million Americans ages 65 or older live with Alzheimer’s disease, the most prevalent form of dementia and among the most costly health conditions, and family members often provide considerable care. Those at greatest risk of dementia in the United States are less-educated older adults; those ages 85 and over; women; and racial and ethnic minorities. On the horizon: the oldest among the nation’s baby-boom generation, now aged 75, will begin to reach the ages of highest risk for dementia.
My main goal is to share the perspective of a person with [Alzheimer’s] disease. It really enhances research outcomes if you can listen to our voice.
Dr. Brenda Nicholson, member of IMPACT Collaboratory’s Stakeholder Engagement Team
Jill Harrison Ph.D., executive director of the IMPACT Collaboratory and assistant professor of health services, policy and practice in the School of Public Health, plays the crucial role of relationship broker in engaging stakeholders to learn about the social, medical, and budgetary needs of PLWD so they can craft solutions to problems inhibiting those with dementia from living their best lives.
“Very few funders will pay for researchers and stakeholders to huddle,” says Harrison, even though it is crucial in helping researchers figure out what the problems are. “Without it, you risk implementation errors and a lack of relevancy.”
A shift, though still at an early stage, is underway in dementia research “to root the solution in the voice of people living with it,” says Harrison: “Don’t assume intervention is of benefit. First ask what the needs are and then prioritize.
“Kali is leading that charge with this small pilot study on frozen vs. hot meals,” says Harrison, noting that 30% of Meals on Wheels (MOW) clients have dementia. The pilot phase tests recruitment, enrollment, and the feasibility of doing the research and includes stakeholder input through two Zoom meetings and interviews. Through data collection and analysis, it will provide a signal of efficacy, which is crucial in seeking funding for a larger clinical trial to identify the best solution.
Listen to our voice
Another leader promoting inclusion is Brenda P. Nicholson MD, who was diagnosed with early-onset Alzheimer’s disease seven years ago at the age of 49, after she began to experience executive-function problems.
A member of the IMPACT Collaboratory’s Stakeholder Engagement Team and its Lived Experience Panel, she helps to develop procedures for the client grant-review process and serves as a peer coach and co-chair of the stakeholder review panel. Earlier, Dr. Nicholson participated in the stakeholder group for PLWD in the 2017 National Research Summit on Care, Services and Supports for Persons with Dementia and their Caregivers, convened by the Department of Health and Human Services. This early effort to include persons with dementia and their care partners in high-level research meetings resulted in a 2020 journal article co-authored by Dr. Nicholson.
She is uniquely positioned to champion inclusion. As a former director of the clinical breast cancer program at Vanderbilt University who went on to private practice as a medical oncologist, she understands the research process and patient care practices. Even the care community, says Dr. Nicholson, doesn’t fully grasp that people living with dementia can help make research “stronger, more pragmatic and successful.”
The life-changing diagnosis carries stigma. “I went from a practicing physician to losing my occupation, and so in a few months people thought I was incompetent,” she says. “It doesn’t work that way.”
The opportunity to be involved in research rebuilt her confidence. “Living with the disease, I can see a positive side of the coin,” she says. Being included in research and serving as an advocate can reduce that stigma.
We learned to ask who we could contact: “Can we speak with a caregiver, a friend, or a neighbor?” Instantly we would call that person and ask: “What should I add to the record?” The extra level of contact is beneficial.
Kayla Clark, clinical social worker at the VNA of Texas
“My main goal is to share the perspective of a person with the disease,” Dr. Nicholson explains. “It really enhances research outcomes if you can listen to our voice.”
To do so, researchers need to be clear in their communication and make information accessible to a general audience. Dr. Nicholson advises them to boil down the elevator pitch and allow PLWD processing time before response.
“There’s a 17-year lag time between trial and successful interaction and publication to adoption in standards of practice,” adds Harrison. Peer-reviewed journals are full of jargon and require a subscription. What would be more helpful is consumer-friendly language and channels that are free. “Use Twitter, visual representation of results and videos.
“That kind of competency is not part of [our] training. We need to build these competencies.”
Invisible factors
The pilot project involves 235 participants in Texas and Florida, drawn from MOW programs’ waiting lists. (Meals on Wheels America, the national membership organization for MOW programs, is Brown’s research partner.) Meals are delivered through Neighborly Senior Services in Clearwater, Florida; Meals on Wheels San Antonio in San Antonio, Texas; and the Visiting Nurse Association (VNA) of Texas in Dallas County.
Hot meals come daily to the home, five days a week, while 10 frozen meals, packaged in a cardboard box, arrive via commercial delivery every other week. The delivered meals are a gift for participants, but waiting for delivery can inhibit plans such as seeing a doctor or family member. “There are invisible factors that only receivers would know,” Harrison says.
Clients, caregivers, drivers, and administrators can describe things from different angles, providing a fuller picture of challenges and benefits. “The stakeholder experience means a lot,” says Kayla Clark, the clinical social worker at the VNA of Texas who spearheaded recruitment for the pilot project in Dallas County. “It includes our organizational perspective and uses our expertise as a piece of the project.”
housing instability, food insecurity, utility needs and transportation. Her perspective as a stakeholder helps to create a fuller picture of the challenges and benefits encountered by program administrators.
Recruitment went slowly at first, Clark says, until she tried a technique mentioned at a stakeholder panel meeting: calling potential participants at three different times a day. Clark enlisted interns to multiply the number of calls to potential participants, and says the approach made a difference.
“We know what works best for us, but not for them,” says Clark. “A caregiver said, ‘Would [a participant] be able to open the cardboard box? Would she know what it was?’ With dementia, the smallest thing can be complicated.”
Few of her clients, for instance, responded to a Brown letter with a gift card incentive, says Clark, though some of them contacted her directly. “There was too much verbiage and it didn’t get to the point of the incentive. It looked like spam.”
Overall, the collaboration was “a big eye opener,” she adds. “It made us more aware and we have tweaking to do.”
Clark revamped the intake process. The assessment now includes questions about memory and her office reaches out to a family member to verify information. “We learned to ask who we could contact,” she says. “‘Can we speak with a caregiver, a friend, or a neighbor?’ Instantly we would call that person and ask: ‘What should I add to the record?’ The extra level of contact is beneficial.”
When the VNA of Texas sends a MOW letter to a client, it also now sends one to the caregiver, and asks for the caregiver’s email address.
Societal benefits
Identifying a preferred communication channel makes sense, as busy care partners may not have support. Washington, who was unable to find a home health aide who is vaccinated to help care for his mother, says he experiences “constant stress” because she forgets to use her walker and drink water.
Getting a meal delivered saves him an hour a day in preparing and cooking a meal. The delivery also creates structure for his mother, who alerts him when the delivery person arrives in the driveway. She feels useful, he notes, and some of the delivery volunteers—whom he sees as de facto social workers— linger to chat with her through the window.
“It’s an honor to be involved in this research project,” Washington says. “It’s a social requirement to help others when you can, and there is a gulf between academic study and real-life benefits.
“Huge societal benefits,” he says, can flow from research and greater public awareness. Enabling people like his mother to stay at home, he adds, means “everybody wins.”
