Literature Review

Advance care planning and unlimited treatment preferences in dementia scenarios: Insights from community-dwelling adultsAmerican Journal of Hospice and Palliative Care; Yuchi Young, Yichun Liu, Yufang Tu, Wan-Yu Chiu, Ashley Shayya, Thomas O'Grady; 4/25Dementia leads to progressive cognitive decline, impairing self-care and decision making. Advance directives (AdvDirs) enable individuals to document healthcare preferences while cognitively capable, ensuring value-aligned care and reducing caregiver burden. In the dementia scenario, 26.9% of participants preferred unlimited medical treatment. This preference was strongly associated with a pre-existing attitude favoring life-sustaining treatments ... and religious beliefs ... Conversely, an interest in learning about quality of life at the end of life was negatively associated with preferring unlimited treatment ... Our findings highlight the need to align advance care planning with individuals' values, beliefs, and religious practices. 

University of Minnesota uses VR to study Alzheimer's, death Government Technology (GT) - Center for Digital Education; by Richard Chin; 5/2/25 At the University of Minnesota, medical school students have been using a virtual reality experience to understand the perspective of a woman dealing with the advanced stages of Alzheimer’s. ... When the University of Minnesota offered to let me experience what it’s like to die, naturally I said yes. Aren’t we all morbidly curious about the undiscovered country, as Hamlet put it, from which no traveler returns? Except this time, happily, I would get to return because it would be a virtual death, an experience in a VR studio that’s part of the university’s Health Sciences Library system. The dying experience is part of a series of VR simulations developed by a nine-year-old California-based company called Embodied Labs. They’ve created immersive, first-person experiences of what it’s like to have dementia, Alzheimer’s or Parkinson disease, vision or hearing loss, to be socially isolated or to experience aging as a LGBTQ person. And what it’s like to die.

Family caregiving for older persons with dementia at end-of-life: A comprehensive overviewInternational Perspectives on Family Caregiving; Cynthia A. Hovland; 4/25 Family caregiving for older persons with dementia at the end of life is a perplexing, challenging, and growing concern across the United States and other developing countries. This overview looks at these epidemiological forecasts, scope, and impact of dementia on the family and caregiver. Using a bio-psycho-social theoretical framework helps to understand identified problems and issues for the caregiver and implications for the older adult with dementia. Caregiver issues include the burdens as well as positive aspects of this role, but the unknown trajectory of dementia poses significant challenges. Caregivers' responses are impacted by their individual resilience and supports, and recommendations for approaches, strategies, and interventions for caregivers and health professionals are provided.

7 signs at home care is needed for someone with dementia VeryWell Health; by Christopher Bergland; 4/25/25 ... At-home dementia care can look different for every family. Some people live alone and may get by with periodic check-ins from professionals in the dementia care community throughout the week. Others might require daily visits from Alzheimer's home care dementia services. Sometimes, a paid caregiver comes to the house daily, or unpaid loved ones provide 24/7 in-home care.

How Lower Cape Fear LifeCare built its Memory Care affiliate Hospice News; by Jim Parker; 4/22/25 Lower Cape Fear LifeCare built from the ground up a program dedicated to serving dementia patients. A growing number of operators have developed programs tailored to patients with specific diagnoses, providing specialized care tailored to their specific needs. Examples include dementia, heart failure and other cardiac conditions, as well as diseases of the lungs. At Lower Cape Fear LifeCare, the program started small and rapidly expanded. The North Carolina-based hospice provider six years ago launched a support group for dementia caregivers, called Memory Partners. This over time bloomed into a full-fledged dementia services subsidiary called LifeCare Memory Partners, Evan Dressel, director of strategy, development and innovation at Lower Cape Fear LifeCare said at the Hospice News ELEVATE conference in Orlando, Florida.

Appropriate deprescribing and payment in hospice dementia careJAMA Internal Medicine; Nathan M. Stall, MD, PhD; Sharon K. Inouye, MD, MPH; Lona Mody, MD, MSc; 3/25People living with dementia are one of the largest growing users of hospice care in the US, with approximately 20% of enrollees having a terminal diagnosis of dementia. In the setting of advanced dementia specifically, guidelines recommend deprescribing cholinesterase inhibitors and memantine as there is insufficient evidence for benefit, and there are risks of adverse events including bradycardia, falls, and gastrointestinal adverse effects. The Centers for Medicare & Medicaid Services specifies that hospices are responsible for covering all medications under the Medicare Part A hospice benefit, but audits have revealed that millions of dollars of prescription drug costs are being inappropriately shifted to Medicare Part D. The study by Hunt et al occurs within a context of growing concerns about shifts in US hospice care where more than 70% of hospice agencies serving patients with terminal illness across all settings now operate on a for-profit basis, with increasing acquisition of hospices by private equity firms and publicly traded corporations. Compared with nonprofit hospices, for-profit hospices have more acute care utilization, provide less direct care, and have poorer caregiver-reported care experiences. For-profit hospices also enroll a higher proportion of persons living with dementia, which may relate to their lower acuity and longer stays, as well as more profitable margins under the per-beneficiary daily payment.

Alzheimer’s risk rises when amount of deep sleep falls, study suggests CNN Health; by Sandee LaMotte; 4/8/25 Need another reason to prioritize your sleep? Not spending enough time in the two deep stages of sleep — slow-wave and rapid eye movement, or REM, sleep — may hasten the deterioration of parts of the brain associated with Alzheimer’s disease, a new study found. Deficits in slow-wave and REM sleep appear to shrink parts of the brain known to be early indicators of cognitive deterioration and Alzheimer’s disease, said lead study author Gawon Cho, a postdoctoral associate in internal medicine at the Yale School of Medicine in New Haven, Connecticut. [Continue reading ...] 

Global study finds 1 in 5 people with dementia receive no care McKnights Long-Term Care News; by Donna Shryer; 4/7/25 A comprehensive global study led by Yale School of Public Health researchers has revealed that at least 20% of people living with dementia receive no care helping them with daily living, regardless of their country’s wealth or development status. As the world’s population rapidly ages, this alarming care gap has persisted for years, creating what researchers describe as “a public health crisis.” The study analyzed data from over 10,000 individuals across the United States, England, 18 European nations, Israel and China. [Continue reading ...]

The most personal column I’ve ever written The Times, United Kingdom; by Professor Tanya Byron; 3/31/25 ... This column will be more personal than any other I have written in my now 20 years writing for The Times. I write it four days after my sister Katrina and I lost our beloved mum, Elfie, who ... had advanced end-stage dementia. Where do we start when trying to describe the many moments of heartbreak and the challenges that come with the long goodbye we have faced with our parents? Dementia is unpredictable. We say goodbye more than once and so the pain of bereavement does not begin at the time of death. Instead it is a prolonged pain marked by gradual losses. Watching a loved one slowly fade away over months or years brings grief, exhaustion and deep emotional turmoil. Amid all this is the experience of being on a rollercoaster of loss and hope, an experience that creates huge lurches between perceptions and emotions. There are moments of clarity and regression, ... [Continue reading ...]

Assisted Living vs. Memory Care: The key differences U.S. News & World Report; by Elaine K. Howley; 3/17/25 Age brings many challenges, among them a loss of independence that means some seniors will need help taking care of themselves. There are many senior living options available for folks who need hands-on support, and two common ones can provide big benefits for residents: assisted living and memory care. While these two options are similar in many ways, they have some important differences. Here, we’ll unpack everything you need to know about these two senior living options so you can find the best type of care for your loved one. ... [Continue reading ...]

The marginalizing and dehumanizing of our sickest and oldest Americans ABA - The American Bar Association; by Charles P. Sabatino; 3/19/25 Being old and with a disability ranks high as a target for discrimination in American culture, where ageism and ableism often prevent the public from seeing marginalization as an aberration. ... Summary:

Revamped tool can reliably assess pain symptoms in dementia patients: researchers McKnights Long-Term Care News; by Zee Johnson; 3/17/25 ... A team of researchers reconstructed the End-of-Life Dementia-Comfort Assessment in Dying, or EOLD-CAD, after a multifacility study showed that caregivers could adequately and reliably address a host of pain symptoms seen in end-of-life dementia patients. ... When clinicians working in the SNFs that were part of the trials used the EOLD-CAD, they were able to detect patterns in more than 600 residents that fell into four categories: physical distress, symptoms of dying, emotional distress, and well-being. Common symptoms observed across these categories were restlessness, shortness of breath, choking, gurgling, difficulty in swallowing, fear and anxiety. ...

Hospice use among Medicare beneficiaries with Parkinson Disease and Dementia with Lewy bodiesJAMA Network Open; Meredith Bock, MD; Siqi Gan, MPH; Melissa Aldridge, PhD; Krista L. Harrison, PhD; Kristine Yaffe, MD; Alexander K. Smith, MD; John Boscardin, PhD; Lauren J. Hunt, PhD; 3/25Lewy body disease (LBD)—an umbrella term that includes Parkinson disease (PD) and dementia with Lewy bodies (DLB)—describes progressive, incurable neurodegenerative disorders. Parkinson disease is the second most common neurodegenerative disorder after Alzheimer disease (AD) and is the fastest growing neurologic disorder in the world.In this cohort study of ... Medicare beneficiaries enrolled in hospice between 2010 and 2020, hospice enrollees with both PD and DLB were less likely to be disenrolled due to extended prognosis than those with AD. Enrollees with PD—but not DLB–were more likely to have longer lengths of stay and revoke hospice. The findings of this study suggest a higher likelihood of revocation of hospice care in PD, raise important questions about their unmet needs in hospice, and highlight the need to disaggregate dementia subtypes for policy analysis.