Valued Partnership

Internship benefits housing provider and doctoral student while supporting older adult residents

When a Boston-based affordable housing developer wanted to survey their residents to better support their health-related needs, they paused. What did they know about approaching older adults to inquire about their personal healthcare?

“We’re developers and project managers, not social workers or healthcare providers,” says Amarillys Rodriguez, Development and Policy Project Manager for the Planning Office for Urban Affairs (POUA). “We needed to bridge this gap and have the kind of expertise on hand to help us better understand our residents.”

Elisabeth Stam, gerontology doctoral student

POUA reached out to the Gerontology Institute at UMass Boston and the two organizations created a graduate assistantship. The opportunity allowed one doctoral student in UMass Boston’s distinguished Gerontology program to help POUA move forward on its Health & Housing Initiative while gaining useful work experience.

A social justice ministry of the Archdiocese of Boston, POUA has more than 3,000 housing units located in Eastern Massachusetts. About one-half of these apartments are homes for older adults. POUA wanted to learn about these residents’ health needs to better serve them by providing support such as preventive care. To accomplish this, POUA decided to develop a voluntary, confidential survey to collect demographic information and information about health conditions, insurance coverage and healthcare provider relationships.

“If we gather this information, we’ll be able to identify any patterns or clusters of particular issues to pay attention to and create on-site, health-targeted resident services,” says Rodriguez.

Elisabeth Stam, a first-year doctoral student studying Gerontology at UMass Boston, began her internship with POUA in the fall of 2020 continuing through the Spring 2021 semester. Among her responsibilities was helping to develop and structure the survey to describe respondents’ health needs. Having someone with an understanding of gerontology and knew how to word questions so residents felt comfortable to participate and respond, was key to a successful survey, notes Rodriguez. Continue reading

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.”

 

How do we build a culture of person-centered care for older adults?

A new report shows that whether care preferences for older adults are considered is heavily influenced by race, income, and other variables.

 “When thinking about your experiences with the healthcare system over the past year, how often were your preferences for care taken into account?”

This question was posed in a healthcare study to approximately 20,000 people over the age of 50 and living across the U.S. The University of Michigan Health and Retirement Study (HRS) is a longitudinal panel study surveying a representative sample of Americans. This ongoing study provides valuable data that researchers are using to address important questions about the challenges and opportunities of aging. The HRS is one of the first to explore the issue of person-centered care. Marc Cohen, PhD

In one of the first studies to examine this new data, three researchers analyzed responses to the question of healthcare preferences in a recent report on person-centered care. The researchers — Marc Cohen Ph.D., Ann Hwang M.D., and Jane Tavares Ph.D.— wanted to understand how aging adults experience care, if their preferences are acknowledged, and whether their experiences vary by race and ethnicity, wealth and income, and/or insurance status.

“The delivery of person-centered care — defined as care that is guided by individuals’ preferences, needs, and values — is an important factor in high-quality healthcare systems,” says Hwang.

Despite the healthcare industry’s assertions that it is becoming more patient-centered, the researchers found that one-third of all older adults (age 50 and over) said their care preferences were “never” or only “sometimes” considered.

Using 2016 HRS data — the most recent data available — the survey revealed stark disparities based on race and ethnicity. While 8% of White respondents said their needs and preferences were  never considered, 16% of Black and 27% of Hispanic respondents gave that answer. The researchers also found that, across all service settings, people who felt that the health system never took account of their care preferences were more likely to forego medical care. They visited a doctor fewer times and were less likely to use home care and outpatient surgery services. The largest impact was on use of prescription medications: they were 39% less likely to use prescription medications. Continue reading

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

Direct care workers experience pandemic challenges, but rate employer preparation, communication high: study

Originally published in McKight’s Senior Living on 11/19/2020

By Kimberly Bonvissuto

Direct care workers have encountered many work-related challenges during the pandemic, but they say their employers have prepared them and communicated well about COVID-19, according to the results of a recent study.

Researchers with the LeadingAge LTSS Center @UMass Boston discussed the study, which explored the overall stress and specific challenges direct care workers experience during COVID-19, their perceived preparedness and the quality of their employers’ communications around the pandemic, Wednesday during a presentation at the LeadingAge Annual Meeting Virtual Experience.

Verena Cimarolli, PhD

The study involved 852 current and former direct care workers in 45 organizations across the country, representing assisted living, independent living, home- and community based services, nursing homes and healthcare services. Responses were drawn from specific research questions embedded in ongoing WeCare Connect surveys used by 155 aging services providers across the country.

Verena Cimarolli, Ph.D., a senior health services research associate at the LTSS Center, said the most frequently reported work-related challenges direct workers reported were an increased risk of transmission of the virus to or from residents, workload demands and understaffing.

A higher percentage of workers who resigned their position (31%) reported a lack of personal protective equipment as an issue compared with current employees (19%). A “strikingly higher” percentage of workers (24%), Cimarolli said, reported that a lack of protocols or guidance from organizations about caring for residents was a challenge compared with current employees (8%). Continue reading

The Makings of a Mentor – Meet Ellen Birchander

This article originally appeared on the UMass Boston News web page.

We all take different paths in life and, if we’re lucky, we have mentors guiding us along the way. As an undergraduate psychology major, 20-year-old Ellen Birchander was on track to fail her journalism class unless she completed an upcoming article assignment. She was directed by her professor to open the yellow pages and interview someone listed as a contact in the first advertisement she saw, which happened to be Greater Lynn Senior Services. Her assignment not only received an A but led to the first job she’d have in the field of aging.

Out of this serendipity came a passion for the work of aging that developed and evolved over the next 40 years. Birchander went on to lead the development of programs and delivery of services for the Executive Office of Elder Affairs, where she served as Assistant Secretary for Programs. Now, after making a career transition from public affairs to public education, she is teaching, mentoring, and co-directing the Management of Aging Services (MAS) Graduate Program in the Department of Gerontology. Continue reading

Institute Talk: A Conversation with Lisa Gurgone on Supporting Area Agencies That Provide Elder Services

Lisa Gurgone is the executive director of Mass Home Care, the trade association representing the Commonwealth’s network of 28 Aging Services Access Points (ASAPs) and Area Agencies on Aging (AAAs). This single, statewide network of coordinated care delivers home and community based services to over 60,000 individuals per month, providing over $600 million per year in services.

Gerontology Institute Director Len Fishman spoke with Gurgone recently about home care services and how the COVID-19 pandemic has affected both consumers and workers providing care. The following transcript has been edited for length and clarity.

Len FishmanLen Fishman: What would a composite profile of a consumer you serve look like?

 

 

 

Lisa GurgoneLisa Gurgone: The typical age is 82 and about one in five are 90 or older. About 55 percent live alone. We have a lot of women with basic homecare needs, someone to help with shopping and food prep. They may need some bathing assistance or have trouble getting dressed in the morning. People sometimes stay in our system for a very long time and may need additional services as they age. We might sub-contract with a visiting nurses association to provide more skilled care. It runs the gamut but the goal is to help these people stay in the community as long as they want. Continue reading

Gerontology MAS Grad Sharon Rose Worked with Mother to Create Events That Engaged Older Adults

Edith Ginsberg and Sharon Rose

Edith Ginsberg and daughter Sharon Rose.

Editor’s Note: This story about the work of an MAS graduate and her mother was in preparation before the coronavirus pandemic dramatically changed the daily lives of older adults and created the necessity for social distancing. Though some of the events and ideas discussed in the story are not currently possible, we wanted to post the story to recognize their work and look forward to a day when we can all gather again socially in larger groups.

By Taryn Hojlo

It started with a simple problem: Edith Ginsberg wasn’t satisfied with the activities offered at her independent living continuing care retirement community.

Ginsberg, a 95-year-old retiree with an inquisitive mind and a PhD, enjoyed video lectures on a range of topics she had seen online. But she wanted live events she and her friends could enjoy at their Edgewater at Boca Pointe residence in Boca Raton, Fla.

Ginsberg enlisted the help of her daughter, Sharon Rose, a professional entertainment consultant and a 2017 graduate of UMass Boston Gerontology’s Management of Aging Services program. Together they created events that mixed video with live lectures. The program quickly became a big hit. Continue reading

Gerontology MAS Student Kate Martin’s Quest to Improve Care Access for Vulnerable Patients

Kate and Michael Martin, with parents Thomas and Susan Martin

Kate and Michael Martin, foreground, with their parents, Thomas and Susan Martin.

By Taryn Hojlo

Kate Martin and her family were exasperated. Her older brother, Michael, desperately needed professional care to help manage his health and daily needs. But there were few providers in Las Vegas who accepted Michael’s insurance, and even fewer who seemed capable of treating him with the same dignity and respect that other patients received without a second thought.

After a lifelong struggle with epilepsy, Michael had considerable physical and intellectual impairments. Although his condition made him eligible for Medicaid, finding local services that would accept it proved to be a struggle. Those that did often neglected to treat Michael as an individual and failed to involve him in the management of his own care. There were times when Michael wasn’t even addressed during his own appointments.

“He struggled pretty significantly with access to care and getting what he needed,” says Martin, a family physician who will be graduating from UMass Boston Gerontology’s Management of Aging Service masters program later this month. Continue reading