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

Book Investigates the Pandemic and its impact on Older Adults

Journal of Aging and Social Policy special edition examines scope,
impact and lessons drawn from Covid-19 for older adults

A special double-issue of the Journal of Aging and Social Policy (JASP) that focused on Covid-19 has been released as a book. “Older Adults and Covid-19: Implications for Aging Policy and Practice” provides 28 articles written by leading gerontology researchers. The authors offer perspectives from around the globe on a host of issues surrounding the virus and its impact on older adults, their families, caregivers, and communities.

Edward Alan Miller

Editor-in-chief Edward A. Miller

Originally published in June 2020, this issue’s release as a book by Taylor & Francis Publishing indicates that the critical questions raised and the policy changes proposed to protect this vulnerable population moving forward deserve continued attention.

“This book is important because nearly everything addressed in the special issue six months ago is still relevant today which reflects poorly in our response as a nation,” said Edward Alan Miller, PhD, a professor at UMass Boston and editor-in-chief of JASP.

As Miller points out in the book’s introduction, older adults have been hit particularly hard by the pandemic. Exposure to the virus has resulted in older adults dying in disproportionately higher numbers, especially in long-term care facilities. Government-mandated actions to lessen the impact of the virus on older adults have had adverse consequences such as increased social isolation, separation from family members, enhanced economic risk, and challenges getting basic needs met. Continue reading

How COVID-19 Has Changed Everyday Life for Older Adults, Long After Pandemic’s Onset

By Taryn Hojlo

How do older adults think about the COVID-19 threat and go about their lives now, many months after the virus first changed their approach to activities of every kind?

Of course there is no single answer to that question, and the way older adults look to the future with the pandemic remaining a real threat varies as well. The Gerontology Institute Blog contacted several members of the Osher Lifelong Learning Institute at UMass Boston to ask them about how they approached the problem and how it affects their routines. They offer a small sample of everyday lives among older adults in the age of COVID-19.

Mona, 69, and Phil Rosen, 72 in Easton, Mass.

 When news of the coronavirus first appeared, Mona and Phil were both reasonably concerned about contracting the virus. They isolated themselves from friends and family, only leaving the house for essential activities. However, they’ve begun to venture out a bit more in recent weeks – while still being careful to adhere to health authority guidelines. 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

Journal Special Edition Dedicated to COVID-19 and Older Adults: Lessons From the Pandemic

Edward Alan Miller

Editor-in-chief Edward Alan Miller

The impact of the COVID-19 pandemic on older adults around the world has been nothing short of breathtaking. Like any sudden crisis, it begs a few common questions: What actually happened and how did we respond? What lessons should we take from that experience? And, most importantly, what do we do now?

In a special double-issue of the Journal of Aging and Social Policy, dedicated to the COVID-19 pandemic crisis, leading gerontology researchers tackle those questions from a wide range of perspectives. The issue, Older Adults and COVID-19: Implications for Aging Policy and Practice, offers 28 scholarly articles available online free of charge.

“The COVID-19 pandemic has devastated populations and economies globally but older adults have been particularly hard hit, due both to direct exposure to the virus itself and to the adverse consequences of efforts taken to mitigate its effects,” said Edward Alan Miller, a University of Massachusetts Boston gerontology professor and JASP’s editor-in-chief. 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: Managing New Issues on Communications, Food Security and Volunteerism

Bread in Bridgwater

Among many volunteers, a retired Bridgwater State University professor baked bread for distribution through his local COA.

The Gerontology Institute’s Center for Social and Demographic Research on Aging is publishing a series of blog posts to follow the ongoing impact of the coronavirus pandemic on Councils on Aging across Massachusetts.  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.

It’s a good thing Zoom and lots of other communications technology exists these days. But the old-fashioned telephone is also playing important role in the plans councils on aging are following to keep in touch with their elder residents.

In Bridgewater, the Fire Department is assisting to help identify phone numbers from census data for over 5,000 residents who are age 60 or older. Those numbers are being used to make wellness calls, but also develop a huge database for town’s emergency response protocol.

In Billerica, volunteers are making about 150 calls each week to check in with elder residents and evaluate their needs.

“During calls to check on patrons, they are so grateful to be remembered,” said Billerica COA Director Jean Bushnell. “It was remarkable to discover that care and concerned flowed both ways, they were actually worried about our staff.” 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

Institute Talk: A Conversation with Hospice Physician Joanne Lynn About Nursing Homes Dealing with COVID-19


Joanne Lynn is a nationally recognized expert on issues related to palliative and end-of-life care. A geriatrician and hospice physician, she is the author of hundreds of journal articles and many books on issues concerning long-term services and supports. Very recently, she has written articles offering detailed advice for nursing homes dealing with the coronavirus pandemic and an overview of policy priorities for upcoming COVID-19 related deaths out of hospitals.

Gerontology Institute Director Len Fishman spoke with Lynn on April 3 about the daunting health challenges facing nursing homes and the best ways facilities can respond to them. The following transcript has been edited for length and clarity.

Len Fishman: Let’s start by explaining the particular risk COVID-19 poses to residents of nursing homes and other facilities like assisted living?

 

 

Joanne Lynn: The people who live in nursing homes and other residential facilities tend to be not only in the age group that has high risk but also to have multiple complicating conditions that make it very difficult to survive a serious bout of COVID-19. Still, many people get a mild case and sail through or have very mild flu symptoms and feel sick for a few days but do okay. But a substantial proportion will have a serious illness. And it looks like something on the order of around 20 percent will die from COVID-19 in these conditions. Continue reading

Institute Talk: A Conversation with Dan Reingold on Leading a Nursing Home in America’s Worst COVID-19 Hot Spot

Dan Reingold is the chief executive of RiverSpring Health and a prominent national figure in the field of aging services. RiverSpring includes The Hebrew Home at Riverdale, a 750-bed nursing home in the Bronx, N.Y.

 The New York State Department of Health reported on March 30 that more than 1,000 residents of state nursing homes, including nearly 700 in New York City, had been sickened by the coronavirus pandemic. Officials said nursing home residents accounted for nearly 15 percent of the state’s 1,218 coronavirus-related deaths at that time.

 Gerontology Institute Director Len Fishman talked with Reingold on March 30 about the challenges of managing a nursing home in an area experiencing the nation’s largest COVID-19 outbreak. The following transcript has been edited for space and clarity.

Len Fishman: Talk a bit about how it feels to be responsible for leading a large nursing home in such a dangerous time and place.

 

 

Dan Reingold: A colleague used the expression that we’re in a whiteout. It feels like that – when you can’t see further out then the length of your hand and you put one foot in front of the other, get your footing secure, and then move the next foot forward. It’s really been quite staggering in terms of the magnitude. We don’t have the right equipment, we’re improvising, and so there’s a little bit of a feeling that we’re fighting a war without all the right ammunition. Continue reading