Engaging People with Dementia

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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.”

 

Reinvesting in home and community-based services

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How the Biden Administration’s $1.9 trillion relief bill will impact Medicaid in Massachusetts

The American Rescue Plan Act (ARPA) — a COVID-19 relief and recovery package — was signed into law by President Joseph Biden last month. Among the $1.9 trillion relief bill’s provisions is a temporary enhanced federal matching percentage (FMAP) for Medicaid home and community-based services. The FMAP is the proportion of every Medicaid dollar spent paid for by the Federal government. Massachusetts could receive as much as $409.2 million during the one-year period covered.

Prof. Miller discusses COVID-19 relief bill

“One of ARPA’s goals is to strengthen state efforts to help seniors and people with disabilities live in their homes and communities rather than in nursing homes or other institutional settings,” said Edward Alan Miller, PhD, a fellow at the Gerontology Institute at UMass Boston and professor in the university’s Department of Gerontology. “The imperative to do so has been underlined by the COVID-19 pandemic which increased demand for safe, high quality alternatives to institutional settings where morbidity and mortality threats from the virus are greatest.”

Organizations serving vulnerable populations — AARP Massachusetts, the Dignity Alliance of Massachusetts and Disability Advocates Advancing our Healthcare Rights — gathered stakeholders statewide recently to look at how this new funding could be directed in Massachusetts and, in particular, expanding and strengthening home and community-based services. Miller was among the speakers to address the group.

The Centers for Medicaid and Medicare Services (CMS) had already allowed states certain flexibilities in meeting the COVID-19 crisis through the option to adopt temporary changes to their Medicaid programs covering home and community-based services. Furthermore, prior legislation had increased the federal matching rate by 6.2 percentage points across Medicaid services for the duration of the Coronavirus emergency. ARPA increased the federal matching rate by an additional 10 percentage points for home and community-based services (HCBS), specifically. The federal government typically pays for half of Massachusetts Medicaid costs. Combined with the early increase, 66.2% of the Commonwealth’s HCBS costs would be paid for by the federal government under ARPA for one year.

“Key stakeholders see the value of the flexibility ARPA provides to address needs across a range of services and populations needing home and community-based support,” says Miller. “There is particular interest in improving the work conditions of direct care workers, including raising wages and benefits to increase their quality of life and improve recruitment and retention. These are issues that directly impact the quality of care delivered.”

In addition, care recipients and advocates view the ARAP legislation as an opportunity to fund the additional services and supports necessary to maintain older adults and younger people with physical disabilities, developmental disabilities, and severe mental illness at home and in the community, not just during the pandemic but beyond.

One key area the legislation does not detail is whether changes considered by states need to be shared, reviewed, or approved in advance by the federal government. The Massachusetts Office of Health and Human Services is waiting for guidance from CMS before finalizing or implementing plans to take advantage of the enhanced federal match. Although the funding period began April 1, 2021, the state would not lose money if plans were not implemented by that date.

 “Developing strategies and processes that best enable states to take advantage of ARPA’s enhanced federal matching funds would give them a leg up should substantial additional resources become available through the American Jobs Plan and other potentially forthcoming federal legislation,” said Miller. Critical to success is consultation with community stakeholders to outline plans on how to expend the additional revenues in the most effective way possible to the greatest benefit of care recipients, their families, and the front-line staff who care for them.”

100th Dissertation Celebrated by UMass Boston’s Gerontology Program

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One in Five Gerontology PhDs are earned at UMass Boston

Krystal Kittle, PhD

The Gerontology program at UMass Boston (UMB) has recognized a significant milestone: its 100th dissertation defense. With the COVID-19 pandemic still requiring most academic work conducted remotely, Krystal Kittle defended her dissertation over Zoom. Her thesis advisor, Professor Kathrin Boerner, attended the online event as well other committee members, faculty, fellow students, and staff to show their support and celebrate her accomplishment.

Established in 1989, the UMass Boston Department of Gerontology is one of the world’s oldest and most recognized programs studying aging across the lifespan. Globally renowned for its multi-disciplinary curriculum, exemplary research and accomplished faculty, one in five gerontologists with a doctorate earned their degree at UMass Boston. The program is also home to the Journal on Aging & Social Policy and Research on Aging, both peer-reviewed journals edited, respectively, by UMass Boston faculty Edward Alan Miller, PhD, professor and doctoral program director for the department and Jeffrey Burr, PhD, professor and chair of the department.

“Doctoral education takes a commitment to the field and a willingness to sacrifice,” says Burr. “Our alumni exemplify dedication, perseverance, and passion for research that makes a difference in society. As we mark this milestone, we celebrate the hard work of our graduates, and the impact they make in the world.”

Jeffrey Burr, PhD

UMass Boston gerontology alumni have been major contributors to the strong international reputation of the program. They live and work across the globe, including in Canada, China, Germany, Israel, South Korea, Singapore, Switzerland, Saudi Arabia, Taiwan, Thailand, and across the U.S. Alumni work in a variety of healthcare settings, for local, state, and federal agencies, not-for-profits that address aging issues and as faculty, researchers and administrators in universities.

“Between the first dissertation defense and the 100th, our students have produced many innovative, cutting-edge research projects and publications in scholarly journals,” says Miller. “They add significantly to the knowledge base on aging, while informing practices and policies that impact older adults, their families and communities.”

Kittle, from California, was the first person in her family to go to college and the only one to earn an advanced degree. She chose to attend UMass Boston’s gerontology program because of its high graduation rate which, she reasoned, meant a supportive and patient faculty. Kittle said she was impressed with the collegiality among the program’s tightknit community of students and faculty.

“The endurance required for a doctorate is considerable,” she says. “The UMB faculty saw something in me that inspired me to keep going.”

Kittle’s dissertation centered on the healthcare of older LGBT adults and “The Role of Minority Stress, Sociodemographic Characteristics and Social Resources.”

“I was a little nervous, but more excited to share what I had worked so diligently on for so long,” she says.

Edward Alan Miller

Edward A. Miller, PhD

Kittle joins an engaged and respected group of professionals. In a recent survey, nearly three-quarters of the program’s 100 doctorates shared how their degree had shaped and supported their career goals.

“My multidisciplinary training from UMB prepared me to be an effective collaborator—one that weaves together the expertise and perspective of colleagues towards a shared purpose,” noted one alum. “[My training] helped me develop extensive knowledge and hands-on skills in conducting qualitative and quantitative research studies that makes a real impact on the care and life of vulnerable and frail elders,” wrote another alum.

Identifying their current professional roles, alumni reflect the wide range of career opportunities available to gerontologists. These prospects are anticipated to increase as older populations are expected to outnumber younger populations in most countries. According to the U.S. Census Bureau, one in every five residents will be retirement age by 2030. By 2034, there will be 77 million Americans 65 years and older and 76.5 million Americans under the age of 18.

“One highlight of faculty life is maintaining relationships with our graduates as they progress in their careers,” says Burr. “We see them at conferences, collaborate on research and welcome their return to campus as guest lecturers.”

After she successfully defended her thesis, Kittle was told she had earned the program’s 100th doctorate. She said it gave her a strong “sense of pride for the program. It felt as if I had come full circle. It was a testament to the commitment that the faculty makes for their students.”

In April, Kittle begins work as a postdoc research fellow in the Social and Behavioral Health Program at the University of Nevada, Las Vegas School of Public Health. The focus of her work is Alzheimer’s disease and related dementias among LGBTQ middle-aged and older adults.

Elder Index at Work: Helping Boston’s Age-Friendly Plan Take Aim at Economic Insecurity

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This article is one in a series of stories about how people across the country are using the Elder Index to understand the true cost of living for older adults and its economic implications. If you know someone who would like to receive information about these stories, send us a note at gerontologyinstitute@umb.edu.

Go to any city across America and you will find older adults struggling to make ends meet. Go to Boston and you will see some of the most serious elder economic insecurity problems in the nation.

This is not news at Boston’s Age Strong Commission, which first launched an ambitious age-friendly plan in 2017. The commission is now developing a Step 2 blueprint with a focus on the problem of economic security among older residents. A critical tool for that job: The Elder Index. Continue reading →

How Massachusetts Can Become a Living Laboratory for Aging

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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.

By Elizabeth Dugan
associate professor in the Department of Gerontology at the McCormack Graduate School at UMass Boston

In a country growing rapidly older, New England has the potential to become a kind of living laboratory for all things related to aging. Several of the nation’s oldest states and communities are here, and it is in our regional DNA to innovate. We are also home to many professionals who can establish New England as a global Longevity Hub — academics, biomedical researchers, financial service providers, technology designers, venture capitalists, housing developers, and experienced government and private sector leaders with a vision of what is possible. Many have not focused their attention on aging yet but, given the potential in this area, they should.
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.

Continue reading →

Nursing Home Reimbursement: A case study

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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.”

New Report Ranks Elder Economic Insecurity in 100 Largest U.S. Metro Areas

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Jan MutchlerOlder adults in every one of America’s large metropolitan areas face serious challenges affording their local cost of living. But the scale of economic insecurity varies dramatically, depending on what city those older adults call home.

A new report by University of Massachusetts Boston professor Jan Mutchler and graduate assistant Yang Li uses the Elder Index™ to analyze the cost of a no-frills elder budget in each of the nation’s 384 metropolitan statistical areas (MSAs), where 83 percent of older Americans live. They also tracked income levels of older adults in the 100 largest metro areas to determine what percentage of elders in those cities had insufficient income to afford their local cost of living without help.

They found a wide range of elder economic insecurity levels among both older individuals and couples living in the larger metro areas. More than 67 percent of older individuals in the Texas metro area covering McAllen, Edinburg and Mission did not have enough income to meet local expenses on their own, the highest rate among the 100 largest MSAs. Continue reading →

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

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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 →

“Older Adults and COVID-19: Implications for Aging Policy and Practice”

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New webinar explores the impact of the pandemic on older adults

View the full slide set here, and a video recording from the 2.5 hour webinar is available here.

Edward Alan Miller, Gerontology Department Professor and Editor-in-Chief of the Journal of Aging & Social Policy (JASP), led the webinar “Older Adults and COVID-19: Implications for Aging Policy and Practice” based on a JASP special issue and book of the same title. The February webinar drew more than 500 registrants from around world to learn about the ramifications of the pandemic for older adults and their families, caregivers, and communities.

Edward Alan Miller

Editor-in-chief Edward A. Miller

“We are extremely gratified with how the webinar turned out, drawing participants and viewers from throughout the United States and globally,” said Miller. “It illustrates how the problems and issues brought to the fore by the pandemic will continue to reverberate well beyond the present day to the years to come.”

The ongoing COVID-19 pandemic has prompted an outpouring of scholarly work on the effect of the pandemic on various populations. Older adults – as well as their formal and informal caregivers – have received a disproportionate share of the pandemic’s impacts. Direct exposure to the virus led to a higher rate of hospitalization and death among older populations, particularly in nursing homes and other congregate living environments. This reality prompted mandates meant to mitigate the virus’ effects on older adults and which, in turn, led to unintended consequences, such as increased social isolation, enhanced economic risk, delays in receiving medical treatment and other supports, and latent ageism.

Continue reading →

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

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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.

Continue reading →