Literature Review

Perspectives on the challenges of planning for and accessing long-term dementia care services through Medicaid and Medicaid WaiversJournal of Applied Gerontology; Justine Scattarelli, Kelly Moeller, Dana Urbanski, Marguerite DeLiema; 4/25 Formal long-term services and supports (LTSS) are essential to support older Americans with chronic conditions, such as Alzheimer’s disease and related dementias (ADRD). However, few older adults have saved enough to pay for LTSS, and navigating Medicaid eligibility criteria presents significant challenges. We conducted semi-structured, in-depth interviews with aging services professionals and caregivers of older adults with ADRD to assess challenges to planning for and accessing LTSS coverage through Medicaid and Medicaid waivers. Using concept mapping, three main themes were identified: (1) Proactive planning, (2) decision points, and (3) the application process. Participants described misconceptions about LTSS coverage, challenges with enrollment, and lack of information about eligibility affecting the LTSS planning trajectory. Results demonstrate a critical need for resources that help caregivers estimate costs and guide them through the eligibility determination, application, and spend down processes for Medicaid programs.

What caregivers should know about end-of-life rallies  AARP; by Jamie Ducharme; 5/19/25People with advanced illnesses sometimes experience unpredictable bursts of energy or clarity. Here’s how caregivers should handle these episodes. Roughly a decade after her mother was diagnosed with Alzheimer’s disease, Liz Donnarumma got her back — but only for an instant. It happened one evening in 2021, more than a year after Donnarumma first realized her mother, Theresa, didn’t recognize her. Theresa took Donnarumma’s face in her hands, called her by her nickname and thanked her. “When she put her hands on my face and I looked into her eyes, she was totally there. It was my mother,” Donnarumma says. “It was like a second, just one second, and it was gone.” Donnarumma’s mother had an episode of “paradoxical lucidity” — that is, an unexpected burst of mental clarity, despite her advanced condition. While these moments are as unexplained as they are unexpected, experts say they are more common than many people realize. ...

New standards could transform palliative care for dementia patients McKnights Long-Term Care News; by Donna Shryer; 5/15/25 An Invited Commentary published Wednesday [5/14/ in JAMA Network Open highlights vital new consensus on when to refer dementia patients to specialist palliative care. The commentary, authored by Laura J. Morrison, MD, from Yale University School of Medicine, analyzes the Delphi survey study, which established the first international agreement on palliative care referral criteria for dementia patients.The Delphi survey study, led by Yuchieh K. Chang, DO, and colleagues, brought together 63 experts from five continents who identified 15 major criteria for specialist palliative care referral, grouped into five categories: dementia type, symptom distress, psychosocial factors, comorbidities and hospital use. Each major criterion was considered sufficient on its own to warrant referral, even for patients expected to live more than two years. Additionally, the study outlined 42 minor criteria, which could be used in combination to justify a referral decision.

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 ...]