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