Engaging People with Dementia

Management of Aging Services grad awarded $500K grant to support project begun at UMass Boston

A modest decline of memory loss is fairly common in aging. But, Debby Dodds MAS ’14 says she could “see the disenfranchisement of early-stage memory loss” in her mother and her friends.

Debby Dodds, MAS

Relocating her mother to an assisted living community near her own family in California, Dodds was dismayed to find that the facility did not have access to wi-fi for its residents. Dodds — who works in technology — found this unfathomable.

“There was this whole population we weren’t connecting with,” she says.

Wanting to use her knowledge of technology to support older adults who, like her mother, were dealing with memory loss, Dodds decided to go back to school to understand the psycho-social aspects of the aging population. She enrolled in UMass Boston’s Management of Aging Services program — offered only online — to study gerontology and explore the field’s current research while pursuing her interest to use technology to support this population.

Among her first projects was using software downloaded to a tablet to record her voice over photos to create a story and share family memories with her mother. Soon her sibling and the grandkids were doing the same. The bonus was caregivers could play the stories for her mom to stimulate fond memories when family wasn’t there. The story engagements produced warm and happy feelings for her mother, personalized engagements with her caregivers and created enjoyable interactions for Dodds and her family members.

“Reminiscing helps us all stay connected to our past successes which can keep us happy,” says Dodds. “With memory loss, it becomes more difficult to recall our life’s joyful events. That is where technology comes in. With personalized and content-driven tablet engagement, people with dementia can stay in tune with the best parts of their personhood.”

Dodds expanded this concept for her capstone project. She created a workshop, TouchTEAM (Tablet Engaged Active Minds), which used digital technology to engage individuals with memory loss and allow their caregivers to connect with them. She launched the free program through the Santa Cruz Public library. The library provided iPads which she loaded with music, games, photographs, puzzles, and videos and volunteers worked with individuals with dementia and their families to offer new ways for them to connect. The workshops were met with considerable success.

Client engaging with CTC app

“The experience I received through the gerontology program was powerful,” says Dodds. “I really cherished my time there. The professors were knowledgeable, patient and guiding. I think one of the most valuable things was being in class with people from all over the U.S. Each state manages its aging population differently. I hadn’t anticipated how valuable that aspect would be. I’ve kept in contact with many of my colleagues and value their perspectives about our work.”

Dodds says she was offered every opportunity to tailor assignments to her interest in using technology to work with people with dementia. Today, she’s a partner in Generation Connect and helping formal caregivers across the U.S. use mobile devices with personalized content to enhance the quality of life for their clients.

Currently Dodds and her colleagues are pilot testing an app based on her capstone project. Awarded a grant of nearly $500,000 from the National Institutes of Health, National Institute on Aging, and Small Business Innovation Research program, the team is piloting the Care Team Connect (CTC) app with a variety of Visiting Angels and Right at Home, home-care agency franchises across the country.

During the pilot, managed tablets with the CTC app are customized to help home care providers collaborate with families and personalize engagement with their clients. Together they develop music playlists to enhance mood, and build a collection of personalized family photos and videos to help caregivers connect more meaningfully with clients, much like family would if they were present.

“The tailored tablet allows us to build trust between the caregiver and the client that is driven by the content family provides,” says Dodds. “There’s such a wide variety of personalized information available. Things such as favorite songs, family photos, or culturally specific events that allow us to tap into who that person is. We had a client who was Navajo, he was moved to be nearer his eldest daughter and lost touch with his culture. We provided his caregivers with a tablet that had videos of Pow Wows and news in his native language. He was thrilled to reconnect with his personhood in this way.”

Dodds says this type of technology can help reduce turnover related to the care of clients with dementia, improve the ability to age in place, and provide support for non-clinical home care services as reimbursable through supplemental benefits.

She knows firsthand how valuable this tool is for the caregiver and the patient.

“My mom lived with memory loss for ten years,” she says. “The last year of her life she lived with my family and we became user number one of the CTC app. I think most people don’t consider having their parents with dementia live with them during the last year of their life, but at that very sensitive time in our lives, it went really well. Investing in the MAS degree helped shaped my life personally and professionally, and I am grateful.”

 

Raising awareness, enabling support for unpaid caregivers

Family caregivers have an important job; supporting their needs will make their work and lives easier

Imagine caring for a child with medically-complex special needs while balancing responsibilities for other family members and trying to maintain a full-time job. Or, consider caring for a parent with dementia whose needs take time away from one’s own family and work.

These are examples of family caregivers —unpaid, and often, untrained — who help parents, spouses, children and adults with disabilities, and other family members with varied needs such as bathing and dressing, managing medications and more complex medical care, and everyday tasks such as preparing meals and keeping track of finances. These are just a few examples of the work they take on so their loved one can receive the care and supervision needed and remain at home.

There are more than 43 million people nationwide who serve as unpaid caregivers. The tasks caregivers take on, as well as the caregivers themselves, are diverse. Given the critical role they play in the continuum of care, it is important to understand how to assist and support their work. To do this, the National Academy for State Health Policy contracted with the LeadingAge LTSS Center @UMass Boston and Community Catalyst to learn what specific services and supports caregivers need and to develop recommendations for change.

Pamela Nadash, PhD, Associate Professor of Gerontology at the LeadingAge LTSS Center at UMass Boston and Eileen J. Tell, a Gerontology Institute Fellow, the project’s co-leads, were part of the team that analyzed the more than 1600 responses.

The research team began by analyzing over 1600 responses from family caregivers and caregiver organizations collected from a recent Request for Information (RFI). The RFI asked respondents to talk about their most pressing needs or concerns as a caregiver and what they would specifically recommend to address those concerns. Continue reading

Studying Relationships Between Older Adults and Their Parents Living With Dementia

Kathrin BoernerRelationships between senior children and their very old parents can be complicated enough. How does those relationships change when the parent is living with dementia?

UMass Boston Gerontology associate professor Kathrin Boerner has spent two years studying the relationships between older adults and their parents, an increasingly common phenomena involving people in their 60’s and 70’s with parents living well into their 90’s. The ongoing project has already attracted broad interest and media coverage in The New York Times and The Boston Globe.

The study’s original design, funded by the National Institute on Aging, was based exclusively on interviews with senior children and their parents together. But researchers found they had to turn away a significant number of volunteering senior children whose parents, living with dementia, could not be interviewed. They were missing an important part of the story. Continue reading

Institute Talk: A Conversation with Bill Reichman on Elder Care Technology and Innovation in the COVID-19 Pandemic and Beyond

William ReichmanWilliam E. Reichman is a physician and chief executive of Baycrest, a leading non-profit elder care organization comprising health care and housing facilities, outpatient services and a research center on one campus in Toronto. His organization operates a 300-bed rehab hospital, a 472-bed skilled nursing facility, 200 assisted living units and 125 independent-living apartments. (Note: In characterizing the facilities, we have used terminology familiar to U.S. readers.)

 Baycrest, affiliated with the University of Toronto, is also home to one of the world’s largest research institutes focused on brain aging and an innovation accelerator focused on elder well-being. Its tele-education program delivers education content and training to 42 countries around the world. 

 Gerontology Institute Director Len Fishman recently spoke with Reichman about ways Baycrest has deployed technology to manage the impact of the COVID-19 pandemic and how those innovations can permanently influence elder care practice. Fishman is also a board director at Baycrest. The follow transcript has been edited for length.

Len FishmanLen Fishman: A recent Washington Post article reported that 81 percent of COVID-19 deaths in Canada are nursing home residents. How has Baycrest been affected?

 

 

 

William Reichman headshotWilliam Reichman: Baycrest has had some sporadic cases of COVID-19, both in residents and patients, as well as staff members who likely brought the virus to the campus inadvertently. I think all told, we’ve had six cases among our 1,100 beds. There have been other senior care organizations in Canada which tragically have had 40 percent or more of their residents test positive for the virus and 25 percent or more actually die from infection. So it’s been catastrophic in Canada. Continue reading

COAs and COVID-19: How Councils Are Adapting to Serve Their Communities

The Gerontology Institute’s Center for Social and Demographic Research on Aging is launching a series of blog posts to follow the ongoing impact of the coronavirus pandemic on Councils on Aging across Massachusetts. Posts reporting on conversations with COA directors about how they manage the evolving COVID-19 challenge will appear on the Gerontology Institute Blog. We encourage COA readers to tell us about their experiences or responses to blog posts by using the reply box at the bottom of each post. 

 How do you deal with a problem as overwhelming as the coronavirus pandemic? David Stevens prefers to think about that answer in phases.

Stevens, the executive director of the Massachusetts Councils on Aging (MCOA), has been leading an effort to provide support, coordinate resources and lead communication with his 350 member-COAs since the COVID-19 crisis gripped the state. Continue reading

How Healthy Aging Data Report Can Contribute to Fight Against COVID-19 in Massachusetts

Beth Dugan, Nina Silverstein, Chae Man Lee

Left to right, associate professor Elizabeth Dugan, professor Nina Silverstein and post-doctoral assistant Chae Man Lee.

A research team at the McCormack Graduate School’s Gerontology Institute published its most recent edition of the Massachusetts Healthy Aging Data Report late in 2018. The report provided detailed information on the health status of older adults across the state. The team, led by associate professor Elizabeth Dugan, also collected a massive amount of local data contained in the report’s 379 separate community profiles.

The Gerontology Institute Blog recently spoke with Dugan and two other team members — professor Nina Silverstein and post-doctoral assistant Chae Man (Jay) Lee — about the report and how it could contribute to the state’s response to the coronavirus pandemic. Here’s what they had to say: Continue reading

Gerontology Associate Professor Kathrin Boerner: Dealing with Grief After Death


UMass Boston Gerontology associate professor Kathrin Boerner has spent much of her career researching a wide range of end-of-life issues. She was recently interviewed by MyRoche, a publication of the global health care company Roche Holding AG, about her work. The following transcript of the interview with MyRoche editor-in-chief Rebekka Schnell was first published in January.

Q: Why are you so focused on death?

 Kathrin Boerner:  Many people do indeed ask me about my concern with such depressing matters. But I don’t see it like that at all. I work on a topic that affects everyone, and that’s what makes it so relevant. What is more, it is fantastic to see the capacity people have to cope with terri­ble loss, and to help those who aren’t doing so well. Continue reading

Institute Talk: A Conversation With Vince Mor on Alzheimer’s Care and the State of Nursing Homes

Len Fishman and Vince Mor

Len Fishman, left, and Vince Mor

Vincent Mor is a leading academic expert on eldercare issues and a national authority on research related to nursing homes. The Brown University professor has been principal investigator in more than 40 grants funded by the National Institutes of Health that focus on the use of health services and the outcomes experienced by frail and chronically ill persons.

Mor and Susan Mitchell of Hebrew SeniorLife are leading an ambitious new collaborative research incubator for “pragmatic clinical trials” that test and evaluate interventions for Alzheimer’s disease and related dementias. Last month, they received a grant from the National Institute on Aging expected to total $53.4 million to fund that work over the next five years. It was one of the largest federal grants ever awarded for Alzheimer’s care.

Gerontology Institute Director Len Fishman recently spoke with Mor to talk about his new project and discuss the state of the struggling nursing home industry. The following is an edited version of their conversation. Continue reading

Institute Talk: A Conversation with Daughterhood Founder Anne Tumlinson on Challenges of Caring for Aging Parents

Anne Tumlinson is the nationally recognized eldercare expert who founded Daughterhood, an online community providing support and advice to adult children caring for their aging parents. She is also the founder of Anne Tumlinson Innovations, a research and advisory firm focused on transforming the way care is delivered and financed.

With more than 25 years of research and consulting experience, Tumlinson has often testified in Washington and written on innovation in aging services. Previously, she led Medicaid program oversight at the federal Office of Management and Budget.

Recently she talked with Gerontology Institute Director Len Fishman about the evolution of Daughterhood, practical problems facing caregivers and policy issues that affect innovation in the field. The following is an edited version of their conversation. Continue reading

Institute Talk: A Conversation with Carl V. Hill on the NIA and Health Disparity Research

Carl V. Hill is director of the Office of Special Populations at the National Institute on Aging, which leads the federal government in conducting and supporting research on aging and the health and well-being of older people. Hill recently visited the UMass Boston campus, where he was the featured speaker at the first annual Gerontology Institute Fellows Dinner. Earlier that day, Hill talked with Institute Director Len Fishman about his career, how he promotes funding for health disparity research and current priorities for the institute’s $3.1 billion research budget. The following is an edited version of their conversation.

Len Fishman: How did you first become interested in a career in public health and health disparity research in particular?

Carl V. Hill: I was in the first class of the Masters of Public Health program at the Morehouse School of Medicine. The founder of that program was Dr. Bill Jenkins, who passed away this year. He was one of the first whistle-blowers on the Tuskegee Syphilis Study. He was also a mentor to many African-Americans in public health and he started this program that allowed many of us to have a start. Later, I had a chance to study for my PhD at the University of Michigan. I worked with people like Woody Neighbors and James S. Jackson, who both worked on the Survey of American Life. They also worked on the Survey on Black Americans, the first data collection on the lives and health of African-Americans in this country. Continue reading