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value=""> <button class="fat-button"><span class="a11y-sr-only">Submit</span></button> </p> </div> </li> </ul> </nav> </header>    <main class="site-main" id="main-content" tabindex="-1"> <div id="panelMainContent"> <article dcrname ="iwDCR0_191903"> <header class="-padding--horizontal" itemscope itemtype="http://schema.org/ScholarlyArticle"> <div class="content-header content-container -width--wide -centered"> <div class="tags"> <ul class="tag__list"> <li class="tag__item"> <a class="tag__link" href="/research-and-innovation/topic.aspx?id=1099">Equity and Inclusion</a> </li> <li class="tag__item"> <a class="tag__link" href="/geriatrics/specialty.aspx?id=1009">Geriatrics and Palliative Care</a> </li> </ul> </div> <h1 class="content-header__heading" itemprop="name">Advocating for a Home-Based Care Approach to Support Homebound Patients and Those Living With Dementia</h1> <div class="content-header__metadata"> <p class="content-metadata"> <span class="content-metadata__media -article">Article</span> <time class="date" datetime="2024-08-27" itemprop="datePublished">Published on August 27, 2024 </time> </p> <p data-module="share-links"> </p> </div> </div> </header> <div class="-padding--vertical -padding--horizontal"> <div class="layout-columns -width--wide -centered"> <div class="layout-columns__main"> <div class="layout-columns__main__content"> <div class="content-summary"> <h3 class="content-summary__heading">Key Findings</h3> <ul> <li>Homebound patients and their caregivers face unique challenges, such as social isolation and overreliance on the emergency department</li> <li>Provision of home-based medical care is an increasingly popular option for people with increasing functional and mobility challenges due to dementia or other chronic serious conditions</li> <li>Massachusetts General Hospital researchers are developing new frameworks and tools to better serve this population</li> <li>The healthcare profession and health care systems must advocate for patients with dementia and their care partners, as they are often unable to do so for themselves</li> </ul> </div> <p>A Massachusetts General Hospital researcher is advocating for a revolution in the way the medical profession cares for homebound older adults with dementia and their caregivers.</p><div class="article__signup-container"> <div class="email-signup-inline__container -background--white"> <style> #email-signup-inline { /* 540px */ background-image: url(/assets/raw/email-signup/cardiovascular-sub-callout.jpg); } @media only screen and (-webkit-min-device-pixel-ratio: 2), only screen and (min--moz-device-pixel-ratio: 2), only screen and (-moz-min-device-pixel-ratio: 2), only screen and (-o-min-device-pixel-ratio: 2/1), only screen and (min-device-pixel-ratio: 2), only screen and (min-resolution: 192dpi), only screen and (min-resolution: 2dppx) { #email-signup-inline { /* 1080 width */ background-image: url(/assets/raw/email-signup/cardiovascular-sub-callout.jpg); } } </style> 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<div class=""> <div class="wForm" id="525-WRPR" data-language="en_US" dir="ltr"> <div class="codesection" id="code-525"></div> <form method="post" action="https://massgeneral.tfaforms.net/api_v2/workflow/processor" class="hintsBelow labelsAbove" id="525"> <div class="oneField field-container-D " id="tfa_9-D"> <div aria-live="assertive"> <p class="marketo-signup__error"> Error: Please enter a valid email address. </p> </div> <p class="marketo-signup__input" data-module="label-float"> <label for="email-address"> Email Address </label> <input type="email" id="tfa_9" name="tfa_9" value="" data-marketo="email" > <button class="fat-button" type="submit" data-label="Submit" class="primaryAction" id="submit_button" value="Submit"> <span class="a11y-sr-only">Submit</span> </button> </p> <input type="hidden" id="tfa_10" name="tfa_10" value="Sub_GeriPall" class=""><input type="hidden" id="tfa_12" name="tfa_12" value="AiM Sub Box" class=""> </div> <div style="clear:both"></div> <input type="hidden" value="525" name="tfa_dbFormId" id="tfa_dbFormId"> <input type="hidden" value="" name="tfa_dbResponseId" id="tfa_dbResponseId"> <input type="hidden" value="f5d5607b12eb6c3bdaff1da6feff5d49" name="tfa_dbControl" id="tfa_dbControl"> <input type="hidden" value="" name="tfa_dbWorkflowSessionUuid" id="tfa_dbWorkflowSessionUuid"> <input type="hidden" value="4" name="tfa_dbVersionId" id="tfa_dbVersionId"> <input type="hidden" value="" name="tfa_switchedoff" id="tfa_switchedoff"> </form> </div> </div> </div> <script id="open-telemetry-script" type="text/javascript" src="https://massgeneral.tfaforms.net/dist/open-telemetry/open-telemetry.152f594b0ae29ae89d4a.js" data-customer-id="1118" data-exporter-url="https://us-east-1-otel.formassembly.com/v1/traces" data-exporter-console="0" ></script> <script src="https://massgeneral.tfaforms.net/api_v2/sst/copy-and-paste"></script> </div> </div> </div> <p>"The way we provide care in the United States for this population is profoundly lacking. And it really needs a different way of thinking," says <a href="https://advances.massgeneral.org/contributors/contributor.aspx?id=1536">Christine Ritchie, MD, MSPH</a>, director of research in the <a href="https://www.massgeneral.org/medicine/palliative-care-and-geriatric-medicine">Division of Palliative Care and Geriatric Medicine</a> and director of the <a href="https://www.massgeneral.org/medicine/palliative-care-and-geriatric-medicine/research/center-for-aging-and-serious-illness">Center for Aging and Serious Illness</a> at Mass General. "There's a huge need among people who are homebound—including the large subpopulation living with dementia and their care partner—for better care in the home that addresses some of the special issues they face."</p> <p>She and her colleagues are researching the topic, publishing papers, and developing programs to help the medical profession see what she calls an invisible population.</p> <h2>Home Versus Nursing Home</h2> <p>Although the U.S. population is aging, the number of <a href="https://pubmed.ncbi.nlm.nih.gov/36857055/" target="_blank" rel="noopener noreferrer">nursing home beds is declining</a>. This is partly due to Medicaid changes in 2013 when the program started allocating more funds for home- and community-based services rather than institutional services.</p> <p>Another reason is that many people prefer to remain in their home or community for as long as possible rather than moving to a nursing home. In the U. S., about 2 million adults are completely or mostly homebound, and about half of them are living with dementia. Dr. Ritchie says this population is not well understood.</p> <p>"Most of our scientific literature has been focused on nursing home care because, frankly, they're easier to see and access. It's harder to see who is homebound and understand them unless you have some reason to see them," Dr. Ritchie says.</p> <p>Unfortunately, the medical profession often sees these patients only when they come to the emergency department (ED).</p> <p>Among those with dementia who are homebound, challenges attending regular care appointments are amplified due to functional and cognitive limitations. "When they have trouble attending appointments, they try to do the best they can in the home, either without being seen or receiving virtual care. But when things go awry, they call 911 and end up in the ED. They tend to use the ED as a substitute for regular and urgent clinical services."</p> <p>Common reasons for ED visits for homebound adults include falls and delirium, accompanying anything from a heart attack to a urinary tract infection. Studies show that being homebound is independently associated with poor outcomes, including higher hospitalization and mortality rates.</p> <p>Furthermore, people who are homebound face a number of health inequities. "If you look at the people who are homebound, as compared to people who are in nursing homes, they are more likely to be persons from ethnic and racial minority backgrounds. They are more likely to have a lower annual salary. They are more likely to describe their health as poor and to have high symptom burden," she adds.</p> <p>Her research and projects aim to help the medical profession see and serve this patient population. "We could continue to provide care as usual in brick-and-mortar settings, but that would not be providing patient-centered care. Patients want to be in their own homes. They don't want to spend a lot of time in the ED. And that will require a different approach than the way that we're doing it right now."</p> <h2>Research and Frameworks for Home-based Care</h2> <p>Much of Dr. Ritchie's work involves developing frameworks for a "true care ecosystem without walls" to serve homebound patients better.</p> <p>In a recent article in <em><a href="https://www.healthaffairs.org/doi/abs/10.1377/hlthaff.2021.01011" target="_blank" rel="noopener noreferrer">Health Affairs</a></em>, Dr. Ritchie and colleague Bruce Leff, MD, of Johns Hopkins University, discussed the importance of data and data analytics, the need for rapid access to durable medical equipment, the role of software and remote monitoring, the requirement for coordinated home health visits and warm handoffs, and the value of risk monitoring and stratification to catch crises before they happen.</p> <h2>Persons Living With Dementia: A Meaningful Subset of Those Who Are Homebound</h2> <p>As described above, almost half of persons who are homebound have dementia. Persons diagnosed with dementia are most likely to become homebound for an extended period of time than any person living with other progressive serious illnesses. Supporting persons living with dementia in the home requires an interprofessional approach if it is to be done well. In <em><a href="https://www.nejm.org/doi/full/10.1056/NEJMp2301347" target="_blank" rel="noopener noreferrer">The New England Journal of Medicine</a></em>, Dr. Ritchie and colleagues developed and proposed a "gerineuropalliative" approach that applies core principles from the fields of geriatrics, palliative care and dementia care.</p> <p>The model breaks the care journey down into stages: early disease, moderate to severe disease, and end of life. It outlines specific ways the healthcare team can meet the full spectrum of needs of people with dementia and their caregivers. This includes:</p> <ul> <li>Strategies to identify persons with dementia</li> <li>Access to interprofessional care, including behavioral health resources</li> <li>Assurance of dementia competency by all members of the care team</li> <li>Up-to-date repositories of community resources</li> <li>Provision of services in the home setting</li> <li>Care of multiple coexisting conditions and attention to polypharmacy</li> <li>Financial and legal planning</li> <li>Prognostication, and navigation of uncertainty</li> <li>Symptom management support for the person living with dementia and their care partner</li> </ul> <p>Her latest effort seeks to increase the capacity of home-based primary care practices in the provision of dementia care. She and Dr. Leff have started by conducting a <a href="https://pubmed.ncbi.nlm.nih.gov/38336779/" target="_blank" rel="noopener noreferrer">pilot clinical trial</a> on how to "train up" home-based primary care practices. Despite the high prevalence of dementia among homebound older adults, Dr. Ritchie and colleagues' scoping review published in the <em><a href="https://pubmed.ncbi.nlm.nih.gov/38663452/" target="_blank" rel="noopener noreferrer">Journal of the American Medical Directors Association</a></em> shows remarkably few interventions focused on this population have been conducted. "The goal is to give them a structured way of caring for the caregiver in a way that also is caring for the care recipient," she says.</p> <h2>Caring for Dementia Caregivers and Patients</h2> <p>Dr. Ritchie emphasizes that any framework for home-based dementia care must also be attentive to the caregiver. Her research has found that both patients and caregivers experience <a href="https://pubmed.ncbi.nlm.nih.gov/38499400/" target="_blank" rel="noopener noreferrer">social isolation</a> and <a href="https://pubmed.ncbi.nlm.nih.gov/36245375/" target="_blank" rel="noopener noreferrer">extensive challenges</a> accessing medical care.</p> <p>As patients develop more functional or cognitive challenges, leaving the house and being out in unfamiliar places becomes more difficult. Caregivers become anxious about going out with patients or leaving them alone, and both become increasingly isolated. As noted above, they may even have difficulty getting to regular clinical appointments.</p> <p>Supporting caregivers in the home is one critical aspect of home-based dementia care. Two of Dr. Ritchie's projects (in partnership with <a href="https://advances.massgeneral.org/contributors/contributor.aspx?id=1223">Ana-Maria Vranceanu, PhD</a>, also at Mass General) focus on caregiver interventions: one studies the best way to offer caregiver support through virtual support groups, and the other evaluates a "bio-experiential" gaming tool for patients and their caregivers. The tool offers video-based, interactive games for people with dementia and their care partners. The games aim to increase attention, create positive emotions, and encourage engagement between dyads. These projects were published in <em><a href="https://www.researchprotocols.org/2023/1/e52799" target="_blank" rel="noopener noreferrer">JMIR Research Protocols</a></em>.</p> <p>"When we work with care partners, we need to see them as members of our team with whom engagement is not optional. They are playing a critical role, and they deserve respect and dignity for the hard, heroic work they're doing," Dr. Ritchie says. "I think this is something that as care providers, we sometimes lose sight of."</p> <p>She suggests:</p> <ul> <li>Consolidate care for these patients and caregivers. Promote provision of medical care in the home, rather than have patients return multiple times.</li> <li>Advocate for this population. They are often overwhelmed and exhausted and, therefore, unable to advocate for themselves.</li> <li>At a policy level, incentivize the provision of care in the home. In addition, support the integration of remote patient monitoring and data-analytics platforms to ensure safety and accountability at home.</li> </ul> <h2>Leading the Field of Home-based Care and Dementia Care</h2> <p>Mass General Brigham is a leader in this field thanks to several initiatives that focus on home-based geriatric care:</p> <ul> <li><a href="https://www.massgeneralbrigham.org/en/patient-care/services-and-specialties/healthcare-at-home/home-hospital" target="_blank" rel="noopener noreferrer">Home Hospital</a> provides eligible patients with hospital-at-home services to reduce their need for ED services.</li> <li><a href="https://www.massgeneral.org/medicine/palliative-care-and-geriatric-medicine/about/home-based-palliative-care-program">Home-Based Palliative Care Program</a> supports patients with advanced serious illness at home.</li> <li><a href="https://www.madrc.org/" target="_blank" rel="noopener noreferrer">Massachusetts Alzheimer's Disease Research Center</a> provides research and resources throughout the Mass General Brigham system to improve dementia care.</li> <li>The Mass General Brigham Mind and Memory Care Program provides wraparound support for people living with dementia in certain primary care practices.</li> <li>Researchers are conducting ongoing analyses of large data sets and collaborating with other major institutions to better understand national trends and needs.</li> </ul> <p>"We have a growing appreciation of the need for home-based care here at Mass General," Dr. Ritchie says. "So much of this work is team-based, collaborative work. It takes a community to provide high-quality care for this high-risk population. There are a lot of great people asking important questions about the way we provide care—and not being okay with it being just the status quo."</p> <p class="cta"> <a href="https://www.massgeneral.org/medicine/palliative-care-and-geriatric-medicine/research/center-for-aging-and-serious-illness">Read about the Center for Aging and Serious Illness</a></p> <p class="cta"> <a href="https://www.massgeneralbrigham.org/en/patient-care/services-and-specialties/healthcare-at-home/home-hospital">Learn more about home hospital at Mass General Brigham</a></p> </div> </div> <aside class="layout-columns__sidebar -article__contributors"> <div class="layout-columns__sidebar__content"> <div class="profile-compact__wrapper"> <p class="u-no-margin"> <strong>Contributors</strong> </p> <div class="profile -compact" itemscope itemtype="http://schema.org/Person"> <div class="profile__content"> <h3 class="profile__name" itemprop="name"> <a href="/contributors/contributor.aspx?id=1536" itemprop="url">Christine S. Ritchie, MD, MSPH ›</a></h3><p class="profile__title" itemprop="jobTitle">Director of Research, Division of Palliative Care and Geriatric Medicine, Massachusetts General Hospital, Director, Mongan Institute Center for Aging and Serious Illness, Massachusetts General Hospital, Professor of Medicine, Harvard Medical School</p> </div> <p class="profile__image"> <img alt="Dr. Christine Ritchie" itemprop="image" srcset="/assets/images/contributors/christine_ritchie_advances.png, /assets/images/contributors/christine_ritchie_advances_2x.png 2x" src="/assets/images/contributors/christine_ritchie_advances.png"> </p> </div> </div> </div> </aside> <section class="topics-layout -article__related"> <div class="topics-layout__inner"> <div class="topics-layout__sidebar"> <h2 class="section-heading">Related topics</h2> </div> <div class="topics-layout__main"> <ul class="topics-list" data-module="topics-list"> <li><a href="/research-and-innovation/topic.aspx?id=1099">Equity and Inclusion</a></li> </ul> </div> </div> </section> <section class="-padding--horizontal -padding--vertical -article__related"> <div class="layout-columns -width--wide -centered"> <div class="layout-columns__pod--half"> <div class="content-tease" itemscope itemtype="http://schema.org/ScholarlyArticle"> <p class="content-tease__topic"> <span class="highlight">Related</span> </p> <h3 class="content-tease__heading" itemprop="name"> <a href="/oncology/article.aspx?id=1582" itemprop="url">Revolutionizing Palliative Care Delivery and Access to Improve Outcomes for Patients and Caregivers</a> </h3> <p itemprop="description"> <p>Research at Massachusetts General Hospital is shifting how integrated palliative and oncology care is delivered to support patients with cancer and caregivers.</p></p> <p class="content-tease__related"> <a href="/geriatrics/specialty.aspx?id=1009" itemprop="relatedLink">Geriatrics and Palliative Care</a>, <a href="/oncology/topic.aspx?id=1098" itemprop="relatedLink">Lung Cancer</a>, <a 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healthcare utilization.</p></p> <p class="content-tease__related"> <a href="/cardiovascular/specialty.aspx?id=1002" itemprop="relatedLink">Cardiovascular</a>, <a href="/cardiovascular/topic.aspx?id=1003" itemprop="relatedLink">Heart Failure</a> </p> <p class="content-metadata"> <span class="content-metadata__media -journal">Journal</span> <time class="date" datetime="2024-08-12" itemprop="datePublished">August 12, 2024</time> </p> </div> </div> </div> </section> </div> </div> </article> </div> </main>  <footer class="site-footer"> <div class="-padding--horizontal"> <nav aria-label="Footer links" class="content-container -width--wide -centered -padding--bottom"> <ul class="footer__nav" role="presentation"> <li> <a href="https://www.massgeneral.org/about">About Mass General</a> </li> <li> <a href="https://www.massgeneral.org/about/support">Giving</a> </li> <li> <a href="https://www.massgeneral.org/news/">News</a> </li> <li> <a href="https://www.massgeneral.org/notices/terms-of-use">Terms 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