Caring for older adults living with Alzheimer’s is not getting any easier, but there are some innovative person-centered care programs and tools that could aid senior living providers in enhancing the wellbeing of residents living with the incurable disease.
And they couldn’t come at a better time. An estimated 5.7 million Americans currently live with Alzheimer’s, the vast majority of whom are age 65 or older, according to the Alzheimer’s Association. By 2050, the annual number of new cases of Alzheimer’s and other forms of dementia is projected to rise to nearly 14 million.
In observance of World Alzheimer’s Day on Sept. 21, Senior Housing News is highlighting two of these budding person-centered care approaches, including a storytelling service that works with Brentwood, Tennessee-based Brookdale Senior Living (NYSE: BKD), and a pilot program being rolled out in 16 assisted living communities affiliated with a variety of providers.
Alzheimer’s is considered such an insidious and feared disease in large part because it robs older adults of their ability to store or recall memories. This affects not only their quality of life, but also their caregivers’ ability to understand what they’re going through.
Senior living providers have long sought new ways to preserve their residents’ unique identities by recording their preferences. For example, Leisure Care’s person-centered memory care program, Opal, includes a four-page binder detailing a resident’s personal history.
There are also third-party services devoted to chronicling older adults’ lives, such as LifeBio. Another such service is MemoryWell, a Washington, D.C.-based digital storytelling platform that employs roughly 600 journalists to interview and write about senior living residents and their families. Today, MemoryWell operates in 33 senior living communities across 14 U.S. states. Of those communities, 19 are managed by the nation’s largest provider, Brookdale. MemoryWell’s unique approach has made headlines in recent years on The Washington Post, Forbes and CBS News.
The core idea behind MemoryWell is to help caregivers and senior living providers better understand their residents. Each story is about 500 to 800 words, and is based on interviews with residents and their loved ones. They generally include photos of residents and also a timeline of some of the events that transpired during their lives, all the way up to present day. All of the stories are available to read on a digital platform for families, including a private page that can be used to catalogue more sensitive caregiving details.
The stories are designed to deliver relevant information as efficiently as possible. Part of that philosophy came from MemoryWell Co-founder Jay Newton-Small’s own experience caring for her father, who was diagnosed with early-onset Alzheimer’s at the age of 58. She remembers filling out a 20-page intake form for her father while moving him into a D.C.-area assisted living community, an experience she described on stage during the recent Disrupting Alzheimer’s event in Chicago.
“I was struggling with these questions, and I said, I don’t really believe you guys are going to read and remember all these data points for 100-plus residents,” Newton-Small told Senior Housing News. “So, instead, I wrote down his story for them. And they really loved it.”
To that end, MemoryWell helps give caregivers the context they need to truly understand who a person is and how they might be experiencing dementia. For example, Newton-Small recalled a retired accountant residing in dementia care who panicked whenever he heard a meal bell. The situation confounded his caregivers, and they tried a variety of ways to calm him down, to no avail — until they learned through MemoryWell that he was also a volunteer firefighter for more than 30 years.
“I think anything that helps us understand and better learn the life story of our residents is always something that fosters person-centered care,” Juliet Holt Klinger, head of dementia care and programs for Brookdale, told SHN. “[MemoryWell is] a remarkable technological solution to that quest that we all have to learn more about our residents.”
This kind of empathetic, person-centered approach could help improve clinical outcomes and quality of care, though the research into this hypothesis is still ongoing, Newton-Small said. And, using a service like MemoryWell can help senior living providers market their communities in a way that’s more appealing to prospective residents and their families.
“It’s so important that … you help improve care and connect people, but the number one reason people don’t put their loved ones into assisted is that they don’t believe they’re going to be treated like the person they know and love,” Newton-Small said. “Sales and marketing is the top reason people want to get MemoryWell.”
MemoryWell has plans for growth in the months and years ahead. Already, the company has built its front-end and back-end systems to scale, and it’s working to expand the pilot programs it has with Brookdale and other senior living operators, including moving into other senior housing settings beyond memory care. MemoryWell also recently started piloting its first Medicare Advantage partnership with Clover Health, a San Francisco-based health care startup.
“We feel its eminently scaleable. This is certainly a market that is being underutilized,” Newton-Small said.
Collaboration is key
While any dementia-related advancement is a net positive, industrywide progress rarely happens in a vacuum. To help foster more collaboration among senior living providers, the Alzheimer’s Association has launched a new pilot program that will connect dementia care experts with leaders from 16 assisted living communities across the U.S.
Participating providers are: Kendal Corp., Brandywine Living, Chelsea Senior Living, Genesis HealthCare, Juniper Communities, Senior Lifestyle, Sunrise Senior Living, Brookdale Senior Living, Brightview Senior Living, Affinity Living, HCR ManorCare, Senior Star, Senior Resource Group, Silverado, St. Paul Elder Services and Forest Hills of DC/Forest Side Memory Care.
The pilot — modeled after a successful “telementoring” project called “ECHO” and developed by the University on New Mexico in 2003 — uses videoconferencing technology to help foster more dialogue between between dementia experts and the people who care for people with Alzheimer’s or other memory diseases.
The program will last six months, and consist of a dozen 60-minute session where leaders will discuss some of the recommendations included in the Alzheimer’s Association Dementia Care Practice Recommendations earlier this year. Those recommendations are meant to emphasize person-centered care, and include such key topics as detection and diagnosis for non-physicians; person-centered assessment and care planning; co-morbidities and medical management for non-physicians; and building and supporting the workforce.
“This pilot is based on the new peer-reviewed, evidence-based Dementia Care Practice Recommendations that are grounded in person-centered care,” Morgan Daven, senior director of health systems with the Alzheimer’s Association, told Senior Housing News. “More than 40% of those in residential care facilities, such as assisted living communities, have Alzheimer’s or another dementia. Given the large number of people affected, it’s important to make improving dementia care a high priority.”
To evaluate the pilot program, the Alzheimer’s Association is partnering with the New York Academy of Medicine, which in 2016 created the first evaluation toolkit and resource guide for users of the ECHO model. Evaluators will look at such benchmarks as process, impact and sustainability, and the program will be enhanced accordingly based on that evaluation.
“One of the main goals of this pilot is to evaluate how this program can improve the quality of care for those with dementia who are living in residential care facilities,” Daven said. “If successful, the next step will be to expand the program.”
The pilot program is offered to participants free of charge, with Senior Star co-founders Bill and Bob Thomas, and their wives, Susan and Jill, as individual donors.
Written by Tim Regan