Literature Review

Amid growing 'scandal' of elder homelessness, health care groups aim to help NPR, Bristol, RI; by Felice J. Freyer; 8/16/25 At age 82, Roberta Rabinovitz realized she had no place to go. A widow, she had lost both her daughters to cancer, after living with one and then the other, nursing them until their deaths. Then she moved in with her brother in Florida, until he also died. ... Rabinovitz joined the growing population of older Americans unsure of where to lay their heads at night. But Rabinovitz was fortunate. She found a place to live, through what might seem like an unlikely source — a health care nonprofit, the PACE Organization of Rhode Island.

Caregiver-reported barriers and facilitators to hospice enrollment for persons with dementia: A systematic review of qualitative evidencePalliative Medicine; by Oonjee Oh, Connie M Ulrich, Lauren Massimo, George Demiris; 7/25Despite the increasing prevalence of dementia, persons with dementia often receive suboptimal care near the end of life. Dementia caregivers experience intrapersonal, interpersonal, emotional, logistical, and physical challenges in ensuring quality end-of-life support for their loved one (e.g. limited understanding of end-stage dementia, gatekeeping providers, and family conflicts). The unique needs of caregivers caring for a seriously ill family member with dementia are not being fully addressed by the current available services and policies.

Implementation of the Pressure Injury Prevention Care Bundle at a home based hospice program: A quality improvement project The Texas Medical Center (TMC) Library Health Sciences Resource Center; by Adaeze U. Amechi-fannin; 8/11/25 Pressure injuries remain a common and serious problem in hospice care, especially among patients who are immobile or confined to bed. Although effective prevention methods are known, inconsistent use of these methods, limited caregiver training, and poor documentation have continued to prevent success in many hospice settings. These wounds cause pain, increase infection risk, and reduce quality of life, making prevention especially important in end-of-life care. ... This project demonstrates that combining structured training, evidence-based care steps, and attention to individual patient needs can successfully reduce pressure injuries in home hospice environments.

Do’s and don’ts when a loved one is dying Psychology Today; by Jessica Schrader; 8/4/25 In the not-so-distant 19th and early 20th centuries, death took place at home. Funeral parlors didn’t exist; the actual parlor in a home (usually the fanciest room) was used to lay out a dead loved one, conduct wakes, and so forth. Children grew up around death and were more comfortable with it than adults today. Currently, many adults have never even seen a dead or dying person.  That can make people so uncomfortable they avoid seeing their dying loved one or reaching out altogether. That may lead to regrets long after the loved one is gone. Healthy ways to avoid fears and regret are to gently confront your concerns, learn a few simple tactics, and offer presence and support instead. Here’s how: 

Caring for a difficult elderly parent during a transitionPsychology Today - Caregiving; "Personal Perspective" by Franne Sippel, EdD, LP; 7/21/25 I am the only child of an only child who lives in an assisted living facility thousands of miles away. I unofficially diagnosed Mom with obsessive-compulsive personality disorder after struggling for years with a relationship fraught with guilt and frustration. ... It’s difficult enough to care for a frail parent when their health is failing. However, the added OCD personality, with its micromanaging, rules, and demands, tests patience beyond compare.  ... A good friend suggested I call hospice to evaluate her. Jim, a hospice RN in his 70s, arrived and instantly assessed the situation with laser-like precision. ... I spend many months going back and forth between South Dakota and Arizona to see my mom. Hospice continues to visit her three to four times a week at the assisted living facility, and a dear family friend also visits her several times a week. ... Editor's Note: Keep reading this article to its end. The insightful, practical, sensitive care from these hospice clinicians generated life-long transformations for this burdened caregiver-daughter. 

The grave outlook for hospice family caregivers Hospice News; by Holly Vossel; 7/10/25 The state of family caregiving in the United States has reached a critical tipping point amid rising demand for end-of-life care and insufficient resources. Many family caregivers are ill-equipped to navigate the complexities of supporting a loved one with a terminal illness, according to Dr. Arul Thangavel, CEO of the advance care planning company WiserCare. Thangavel is also an attending physician at the University of California, San Francisco (UCSF). Among the issues is that conversations about the end of life and goals of care are often brought up far too late in a disease trajectory, Thangavel said. This trend leaves families grappling with uncertainty, moral distress, guilt and compounded grief in the decision-making process, he stated. 

Grieving the living: How Hospice of St. Lawrence Valley helps caregivers cope North Country Now, St. Lawrence County, NY; by Kate Favaro, Hospice of St. Lawrence Valley; 7/10/25 With caregiving comes grief, there’s no way around it. You will grieve two important things that you’ve lost: who the person you’re caring for used to be, and the things that will never be. Take the time to explore the grief you’re experiencing so you can provide the best care possible. If you’re not taking care of yourself, you won’t be able to take care of anyone else. Hospice of St. Lawrence Valley offers the following on the grief of caregiving:

F.O.U.R. Steps to celebrate July 4th in a dementia-friendly manner Alzheimer's Foundation of America; 6/30/25 Fireworks and gatherings are staples of the July 4th holiday, but these can create unique challenges for families affected by Alzheimer’s disease and other dementia-related illnesses. With Independence Day approaching, the Alzheimer’s Foundation of America (AFA) is advising families to follow the F.O.U.R. steps to create a dementia-friendly 4th of July. ... AFA encourages caregivers to follow the F.O.U.R. steps to create a dementia-friendly 4th of July:

‘Smartest thing I ever did:’ Woman shares how grief counseling helped her through tragedy WGHP, Asheboro, NC; by Brayden Stamps; 6/17/25 Everyone goes through grief at some point in their life and it is important to get help when you need it. Hospice facilities serve families in more ways than just providing their loved ones with a place to stay during their final days. “It was the smartest thing I ever did,” said Darlene Tolbert, a grief counseling client with Hospice of Randolph. Tolbert came to Hospice of Randolph at the recommendation of a friend after she lost her son to suicide.

‘It was meant to be’: How a haircut became a gift for hospice patients Simple Health - KXAN, Austin, TX; by Esmerald Zamora; 6/15/25 In addition to its clinical care, Blue Water Homecare and Hospice [in Central Texas]also runs a volunteer program designed to enhance patients’ quality of life. Through that program, a new partnership has formed with Maria’s Hair Studio and Barbershop in Round Rock to provide free haircuts to hospice patients in the comfort of their homes. ... Volunteer Coordinator Steve Wanzer said the idea came from a patient request. A social worker reached out to Wanzer, asking if he knew anyone who could provide a haircut. As fate would have it, Wanzer was driving past Maria’s Hair Studio at that very moment. ... Since then, the simple gesture has become a cherished part of the care Blue Water provides. [Bluewater owner Jennifer Prescott said,] “As hospice professionals, we understand how important it is to help people feel good. This small act of kindness goes a long way.”Editor's Note: How beautiful, and so easy to replicate. This brings a smile to me. My Mom was living in our home with hospice care. Confined to an upstairs bedroom, she asked me how she could get a long overdue haircut. She laughed, "I want to look good in my casket!" My longtime hairdresser came to our home, lovingly tended Mom and her hair, and took a now-favorite photo of Mom and me. She died 3 weeks later. Yes--in her casket--Mom was beautiful!

Navigating the ‘Long Goodbye’ Help for caregivers of those with Alzheimer’s Dementia The Journal; by Renee Bledsoe, LPN, CHPLN, Hospice of the Panhandle; 6/16/25 ...  [Important statistics:] ... Right now, there are more than 38,000 individuals over the age of 65 in West Virginia with Alzheimer’s Dementia and about 65,000 caregivers. The estimated total lifetime cost of care for someone with Dementia is more than $400,000 and about 70 percent of that cost is borne by family caregivers in the form of unpaid caregiving and out-of-pocket costs. Sixty-six percent of caregivers live with the person for whom they are caring. More than half provide care to a parent or in-law, and about a quarter of those are also caring for at least one child. It comes as no surprise that 59 percent of dementia caregivers report high emotional stress, and 38 percent report high physical stress, according to the 2025 Alzheimer’s Disease Facts and Figures report. ... Hospice of the Panhandle is no stranger to the emotional, physical and financial challenges that the caregivers of those with Alzheimer’s Dementia in our area face every day. ...

Dementia severity associated with unmet caregiving needs during skilled home health careJournal of Applied Gerontology; Julia G. Burgdorf, Jennifer L. Wolff, Yolanda Barrón, Halima Amjad; 5/25One-third of home health care (HHC) patients have dementia. We examined 426,608 older (65+) HHC patients with dementia in 2018. Unmet caregiving needs were determined from HHC clinician reports indicating that (1) no caregiver was present (lack of availability) or (2) the caregiver needed training (lack of capacity). Most (83%) HHC patients with dementia experienced an unmet need for caregiving. Medicaid enrollment and depression were associated with lack of caregiver availability; greater clinical severity and being post-acute were associated with lack of caregiver capacity. Patients with high (compared to low) cognitive symptom severity had higher odds of unmet needs due to lack of caregiver capacity ... Findings illustrate the gap between dementia caregiving needs and capacity, highlighting the importance of supportive resources such as training.

His sick wife asked him to kill her. Now that she's gone, he says the loneliness is worse. USA Today; by Madeline Mitchell; 6/11/25 Ever since his wife died in December, David Cook feels like a stranger in his own home. ... The loneliness “is a problem,” Cook said, and sometimes he slips into dark, depressive episodes he can only shake with sleep. He avoids the living room, with the framed photos of the two of them smiling together, the new plush carpet, the television where they'd watch tennis and golf and the ghost of the recliner she used to sit in. Patricia Cook died there, so for now − maybe forever − it's off limits. ... When she went into hospice in their living room, adamant that she’d die in her own home, the pain was excruciating. “She actually, several times, asked me to kill her," Cook said. "And I didn’t even have to think about it, I just said, ‘I’m sorry.’ I said, 'I just can’t do that.’” “Do you know how hard that is?” Cook said. “When someone asks you to kill them?” ... Editor's note: Spoiler alert. David Cook did not kill his wife. Still, he asks, "What more could I have done?" Read this story to develop your understanding of the profound depths of loss for spouses/partners, especially when they have served as caregiver through challenging needs.