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 Massachusetts Can Become a Living Laboratory for Aging

Reposted from The Boston Globe 

Let’s measure what’s going on in cities and towns so we can identify how a community’s aging circumstances change over time.

Historically speaking, population aging is new and presents a growing, largely untapped resource. Aging is something we all have in common, and we can leverage that collective reality to create moon-landing levels of advancements. We need a mindset that sees the older population as a solution and opportunity, not a burden or cause for panic.
One of the keys to seizing this opportunity is to measure what’s going on in our cities and towns and identify how a given community’s aging circumstances change over time. This goes far beyond simple head counts of how many are over 65. It requires granular information on a community-by-community level to really be effective.
My research team at the Gerontology Institute in the McCormack Graduate School of Policy and Global Studies at the University of Massachusetts Boston has been creating such tools for nearly a decade, with support from the Tufts Health Plan Foundation. We started in Massachusetts, collecting detailed data, most recently in 2018, about older adults living in every one of the Commonwealth’s 351 cities and towns, and we then produced similar information for Rhode Island, New Hampshire, and Connecticut. All this information can be found in our Healthy Aging Data Reports, available at healthyagingdatareports.org.

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Nursing Home Reimbursement: A case study

The current financing structure of Pennsylvania nursing homes is not sustainable

Nursing homes play a critical role delivering long-term services and supports (LTSS) to older adults and individuals under the age of 65 with disabilities. Despite this, these facilities face serious threats to their financial viability. A new report documents the increasingly important role nursing homes play in Pennsylvania, the key demand and supply factors affecting nursing home performance, and highlight implications for the financial viability of nursing homes going forward.

Edward Alan Miller

Editor-in-chief Edward A. Miller

Using data from a variety of sources, the researchers demonstrate that the demand for nursing home care is expected to increase, but the reimbursement level from Medicaid — the growing source of payment for nursing home residents — is causing a financial strain on these institutions. The report, “The Case for Funding: What is Happening to Pennsylvania’s Nursing Homes,” was written by researchers with the LeadingAge LTSS Center @ UMass Boston and funded by The Jewish Healthcare Foundation.

Data between 2010 and 2018 indicate that nursing homes are serving lower income individuals with more challenging diagnoses, including more severe cognitive impairment and psychiatric illness, as length of stay and occupancy has declined. Coupled with Medicaid as a payment source for increasing numbers of residents, the researchers expect to see more nursing homes face financial challenges in the coming years.

“The current financing structure supporting nursing home care in Pennsylvania is not sustainable,” says Edward Alan Miller, PhD, one of the report’s authors and Professor of Gerontology at UMass Boston. “Unless the reimbursement rates paid by the Medicaid program are brought more in alignment with the costs of providing high quality care in a safe manner, providers will face increasing challenges caring for Pennsylvania’s most vulnerable residents.”

Data on professional and support staff in nursing homes also indicate a concerning trend:

  • Even as patients are presenting with more challenging diagnoses, overall staff hours among direct care workers have remained relatively unchanged over the last ten years and RN hours have declined slightly.
  • Compensation for direct care workers has remained relatively flat, increasing by only 1.9% per year from 2012 to 2019. When adjusted for the medical consumer price index, real wages have declined an average of .78% annually during the time examined.
  • While certain individual quality metrics have improved — such as declines in the numbers of bed sores — overall aggregated quality scores have not.Marc Cohen, PhD

“The growing gap between what facilities need, as reflected in charges, and the Medicaid reimbursement rate has come at a time when nursing homes are being asked to care for an increasingly complex and frail mix of residents,” says Marc Cohen, PhD, one of the report’s authors and Co-Director of the LeadingAge LTSS Center @ UMass Boston. “The result has been increased cost shifting to individuals and families who must pay for care privately or take on additional caregiving responsibilities. Nursing home services represent a critical component in Pennsylvania’s continuum of care. Our study demonstrates that more needs to be done to support them.”

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

Boston’s Older Population: Increasing in Racial Diversity, but Quality of Life is Shaped by Racism, Discrimination

A new report from UMass Boston identifies aging equity among Boston residents

The number of Boston residents aged 60 and older has increased by more than one-third in the last eight years and more than half of older residents are persons of color. However the experiences of these older residents differ substantially depending on race, ethnicity and gender, and challenges their abilities to thrive.

A new report, “Aging Strong for All: Examining Aging Equity in the City of Boston,” by researchers at the University of Massachusetts Boston, documents disparities across three dimensions that impact quality of life — economic security, health, social engagement — and identifies opportunities for stakeholders to ensure an environment in which “aging strong” is possible for all Boston residents. Jan Mutchler

“It has never been more critical to strategically pursue greater equity in the aging experience of Boston residents,” says Jan Mutchler, PhD, director of the Center for Social and Demographic Research on Aging at UMass Boston, a professor in the Department of Gerontology and one of the study’s authors. “The numbers of older adults are increasing and stakeholders share a growing recognition of the powerful ways in which inequity, racism, and discrimination shape health outcomes and the aging experience, amplifying the need to examine and remediate disparities in aging.”

The report identifies substantial disparities across racial and ethnic groups, such as:

Economic security

  • Poverty rates are especially high among Asian Americans and Latinos, and more than one-third of these residents age 60 or older live in households with incomes below the federal poverty line.
  • Sizable gaps differentiate racial groups. For example, while a similar share of non-Hispanic White, Black and Native American people aged 66 or older receive Social Security benefits, percentages receiving Social Security are considerably lower for Latinos and Asian Americans.
  • Housing costs in Boston place a heavy burden on older residents and half or more of renters age 60 or older pay more than 30% of their incomes for housing. Fewer homeowners bear such a heavy cost burden for housing, but older Black, Latino and Native American homeowners are at amplified risk for being cost-burdened.

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Transforming the Future of Aging

Bei Wu works toward improving health status through research and policy

If the world of academic gerontology had a rock star, it would be Bei Wu, MS ‘97, PhD ’00.

Recognized for her extensive research and pursued by top tier universities, Wu has become an international leader in the field since graduating from the University of Massachusetts Boston’s Department of Gerontology. Add the years in policy work before earning her doctorate and Wu chuckles that, having spent more than half of her life in the field of gerontology, she herself is now experiencing the aging process.

“I’ve become my own study subject,” Wu says.

Today, Wu is the Director of Global Health and Aging Research at the Rory Meyers College of Nursing, and Director for Research at the Hartford Institute for Geriatric Nursing at New York University (NYU) and the inaugural co-director of NYU’s Aging Incubator, a university-wide aging initiative.

Given her considerable success in gerontology, it’s fitting she credits her grandmother — with whom she was extremely close — for nudging her into the field. Born in Shanghai, Wu’s parents left her and her brother in their grandparents’ care when the two were young. After college, Wu accepted a research position with the Shanghai Commission on Aging only after prompting by her grandmother.

“At the time, very few people thought aging would be a challenging issue in the future,” Wu says.

But writing policy briefs and launching studies on intergenerational support with the United Nations Population Fund convinced Wu to pursue graduate studies. With no options available in China, she chose UMass Boston.

“UMass Boston has had a significant impact on my career,” Wu says. “The gerontology program has a critical mass of excellent faculty.” Continue reading

Pension Rights

Help is available to secure your pension

Whether your retirement is close at hand or years away, you’re likely counting on savings and other income sources you’ve maintained to provide you with a comfortable and secure life after working for years. If you’re counting on a pension, take steps now to make certain it’s in place and available when you decide to retire.

A defined benefit pension is a retirement plan that may provide monthly income for the rest of your life. Pensions are sponsored by your employer and provided to you based on your years of service, compensation and other factors. Unlike a 401(k), the employer bears all of the risk and responsibility for funding the pension plan. But, employers can make mistakes.

Take the case of William, a Pension Action Center client.

William worked for a company outside of Chicago off and on for about 20 years. He had two breaks in service that resulted from factory-wide reductions in force. After the first layoff, he was recruited back, because the factory needed someone with his specialized skills. When he was laid off again, he had worked about 12 years in total, and was fully vested in the company’s pension plan.

In the mid-1980s, the company that owned the factory decided to close it down permanently. The company again recruited William back to help with the closure. He understood that his brief return would increase his pension benefit at retirement.

But the employer made a big mistake. When personnel matters were wrapped up for the remaining factory employees, William’s service credit for his pension was recorded based on his short return to his employer to close down the factory. The employer did not credit him with the 12 years of service from earlier in his career. As a result, William was not included on the list of employees who had earned a pension. 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

Reach Out Massachusetts Mobilizes Communities to Combat Social Isolation

The desire to spend time alone is a natural and even healthy urge. But, seeking time alone and social isolation, are not the same.

Social isolation — defined as a lack of social connections — is considered a serious public health risk and can impair one’s physical and mental health. Older adults are at increased risk for social isolation because they are more likely to have lost a spouse and close friends, live alone, suffer from a chronic illness, or have limited mobility.

To combat this devastating public health problem, the Gerontology Institute at UMass Boston and AARP Massachusetts have created a resource guide highlighting ways in which many Massachusetts cities and towns are already addressing social isolation in their communities. The guide is the first completed project of the Massachusetts Task Force to End Loneliness & Build Community. The task force is co-led by Sandra Harris, president of AARP Massachusetts, and Caitlin Coyle, Ph.D., the lead author of the resource guide and a research fellow at the Gerontology Institute at UMass Boston. 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