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.”

 

Reinvesting in home and community-based services

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.”

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.”

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

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.

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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

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

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