Literature Review

[Kazakhstan] Mechanisms of chronic pain in Alzheimer's Disease: A narrative reviewCurrent Medicinal Chemistry; Roman Konovalov, Mina Aubakirova, Dmitriy Viderman; 4/25AD [Alzheimer's Disease] causes structural and functional alterations in the affected brain, including shrinkage of gray matter volume and disruptions in brain network connectivity. Besides memory loss, pain is a significant yet often neglected symptom. Effective pain management in AD is challenged by the adverse effects of pain-relief medications and communication difficulties, especially as the disease progresses. Pharmacological options include opioids, nonsteroidal anti-inflammatory drugs, paracetamol/acetaminophen, and adjuvant pain relievers like antidepressants and antiepileptic medications, though these are not officially approved for pain relief in AD. Non-pharmacological strategies, such as exercise therapy, music therapy, Reiki, reflexology, and behavioral therapy, are preferred to prevent the side effects of medication. The review highlights a crucial link between neurological changes in AD and the perception of pain, underscoring the need for customized pain management approaches for this population.

10 Signs death is near for dementia patients The Healthy; by Dr. Patricia Varacollo, DO; 6/2/25 For families and caregivers, recognizing the final stages of dementia can be difficult, but understanding the signs can help ensure comfort and dignity in a loved one's last days. Dr. Koncilja highlights these key indicators that may suggest the end of life is near:

Why CMS’ GUIDE Model could move home care from side act to main stage Home Health Care News; by Joyce Famakinwa; 5/29/25 The Guiding an Improved Dementia Experience (GUIDE) Model might be one of the biggest steps in the right direction for recent Medicare policy. The eight-year voluntary nationwide program was launched last year by the Centers for Medicare & Medicaid Services (CMS), with the goal of supporting individuals living with dementia, as well as their unpaid caregivers. The program’s focus is more important than ever, with an estimated 6.7 million people living with dementia. This amount is expected to skyrocket to 14 million cases by 2060, according to data made available by CMS.

Referral criteria for specialist palliative care for patients with dementiaJAMA Network Open; Yuchieh Kathryn Chang, DO; Jennifer Philip, PhD, MMed, MBBS; Jenny T. van der Steen, PhD; Lieve Van den Block, PhD, MSc; Allyn Yin Mei Hum, MD; Pedro E. Pérez-Cruz, MD, MPH; Carlos Paiva, MD, PhD; Masanori Mori, MD; Ping-Jen Chen, MD; Meera R. Agar, PhD, MPC, MBBS; Laura Hanson, MD, MPH; Catherine J. Evans, PhD, MSc, BSc; David Hui, MD, MSc; 5/25Dementia is an ever-growing public health issue with currently more than 55 million people worldwide living with this disease. Due to an aging global population, this number is projected to triple by 2050. As the number of people with dementia continues to grow worldwide, there is a need and an opportunity to collaborate and provide seamless integration of specialist palliative care with the primary palliative care already delivered to enhance the care of patients with dementia. To help advance this goal, the 15 major criteria identified here represent a first step toward clarification of primary and specialist palliative care roles and consideration for systematic screening of symptom and supportive care needs.

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.