Literature Review

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.

Terminally ill woman, 35, cancels plans - best friend’s reaction backed Miami Herald, Miami, FL; by Lydia Patrick, Newsweek Life; 6/5/25 A woman has sparked an outpouring of support online after admitting she felt relieved when her terminally ill best friend canceled their remaining plans. The anonymous Reddit user, ... shared her emotional experience ... where her confession received over 8,000 upvotes and hundreds of comments. She explained that her best friend, Sarah, 35, had been diagnosed with an aggressive form of pancreatic cancer and her condition rapidly worsened. ... In an effort to make the most of her time, Sarah created an ambitious bucket list, which included a trip to the coast, a party, and a final hike to her favorite mountain. However, after halting treatment, she transitioned into hospice care and most of the planned activities were either canceled or significantly scaled back. ... [Serving as primary caregiver, she wrote,] "And I'm relieved. I'm utterly, profoundly ashamed to admit it, but I'm exhausted. Mentally, emotionally, financially. ..." ... Dr. Terri Daniel, a grief counselor and hospice chaplain at Forest Park Hospice, told Newsweek the Redditor's experience is not uncommon and far from selfish.

Hospices facing a US caregiving ‘crisis’ Hospice News; by Holly Vossel; 6/2/25 Family caregivers in the United States are being challenged by a swelling aging population inneed of greater support and stronger policy infrastructures. Much room for improvement exists at both state and federal levels when it comes to recognizing the important roles that family caregivers play, according to Steven Lee, co-founder and CEO of ianacare, a Boston-based patient and caregiver resource company. More innovative care models and disease-specific reimbursement options have widened pathways for hospice providers to improve family caregiver support, Lee said in a recent Hospice News Elevate podcast. But these fall short of addressing the diverse scope of practical, emotional and financial needs, he stated. Editor's note: This article has an excellent map of US states with caregiver categories for "Well-Supported," "Safe for Now," "High Risk," and "Critical" (courtesy of Otsuka America Pharmaceutical). Additionally, our sponsor Hospice Analytics provides the National Hospice Locator, for caregivers/families to find hospices that serve in each US county, and sorted by their quality scores. And, our sponsor Composing Life equips hospice organizations with caregiver/family video libraries that span the continuum of serious illness, hospice, and grief care. 

I quit my healthcare job to take care of my grandmother. It’s a mix of happy and sad moments, but ultimately has been life-changing for us. DNYUZ; "as-told-to essay based on a coversation with Kristina McDonald"; 5/26/25My grandmother is 80, and my grandfather is 83. I quit my full-time job to care for my grandmother as I noticed that her undiagnosed dementia was worsening. ... 

Good grief: Personal stories show hope still exists after loss ABC KTRK-13; by Brittaney Willmore; 5/19/25 Stories are at the heart of the memorial garden at Bo's Place. The building, with its red brick entryway, tall trees, basketball court, and patio, was intentionally designed on the outside to look almost like two arms, reaching out and welcoming in those who find themselves there as guests, but leave feeling like it's home. Carmichael Khan is familiar with the garden, which isn't made up of plants in this particular case, but of rocks that serve a very distinct purpose. Resting in the palm of his hand is his daughter's rock, which says, "Just bee." "That's why you see bees there. You just want to become. You also want to sit with your grief and just be," Khan explains. Rocks represent, but don't replace late loved ones, and painting them with personality just one of the many ways meant to help grieving children, adults, and families at Bo's Place cope with one of the most difficult parts of life -- death. 

[June 12-18, 2025] Why celebrating CNA Week is a big deal ShiftMed; by Sarah Knight; 4/23/25 National Certified Nursing Assistant (CNA) Week, which kicks off on the Thursday of the second full week of June, is an annual tribute to the dedicated individuals who form the backbone of our healthcare system. So, as we approach CNA Week 2025, we must recognize their tireless efforts and unwavering commitment. ... CNA Week 2025 kicks off on Thursday, June 12 and runs through Wednesday, June 18. This year’s theme, “We Are the Champions,” celebrates CNAs as the unsung heroes of frontline care—professionals who ensure patients feel seen, heard, and truly cared for every single day. ...

CAREGIVING: For 27 years, I had minimal contact with my abusive mother. Then she moved in with me. HuffPost; by Carole Brodsky; 1/20/25  ... Living with my mom was the last thing I ever thought I’d be doing as an adult. Perhaps I accepted her back into my life because there were no other options available. Perhaps it was because I was the daughter of someone who in today’s vernacular would be called a “tiger mom,” and I’d been taught caring for an aging parent was what “good daughters” did.  ... As a child, my mother was abusive.  ... [Now, as] Mom’s verbal skills declined, we had to use our eyes, guts and hearts to discern the needs of a person whose tether to this world was fraying before our eyes. ... My partner has a saying: I always forgive, but I never forget. I have unequivocally forgiven my mother for everything. I have tried, with varying degrees of success, to let the vestiges of her abuse die with her and not invade the lives of my children, grandchildren and now, great-grandchildren. The work on forgiving myself will continue for the rest of my life.

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.

Video: California firefighter ‘Living the best of these last months’ on hospice care VITAS Healthcare, Irvine, CA; Press Release; 4/28/25 “Hospice is not something that means death right away. It means health and happiness,” said Debbie Forrester, spouse and patient caregiver for former firefighter Jim Forrester of Orange County, California. In a new video, launched during Patient Experience Week, VITAS® Healthcare shares the story of a patient with terminal cancer whose life was dramatically impacted by the help of his hospice care team. Within a week of being cared for by the interdisciplinary team at VITAS, Mr. Forrester, who had been depressed and was unable to walk, began enjoying time with his grandchildren and even riding his bike again.

Turning grief into art: Ringling College student brings legacy to life for hospice patients SRQ Media, Sarasota, FL; 4/23/25 At just 19 years old, Ringling College of Art and Design student Leo Motherway is using his talent to help others preserve the stories that matter most. Through the Lazarus Engaged Learning Assistantship, this second-year Illustration major discovered legacy books—deeply personal keepsakes that capture the lives of hospice patients through words and art. Inspired by the loss of his grandmother and father, he's now a passionate volunteer with Empath Tidewell Hospice, illustrating legacy books and organizing creative campus events to engage fellow students. His latest endeavor, Colorful Conversations, is a 20-page illustrated book designed to spark memory and connection for dementia patients through conversation prompts. For Leo, this work is more than volunteering—it’s a way to honor the past, uplift the present, and ensure no story goes untold.

Closing the hospice care coverage gap in Florida Naples Daily News, Naples, FL; by Nichole Goble; 4/20/25 For too many Floridians living with serious illness, accessing high-quality hospice care remains a challenge. Families are left struggling to find the support they need, and patients are forced to navigate complex medical decisions without adequate guidance. In Florida, this gap is especially pronounced, leaving thousands without the specialized care that could improve their quality of life. Caregiver Action Network (CAN) is dedicated to advocating for caregivers and their loved ones. ... Living in a rural area, bringing in hospice support to the home ensured that family could more easily be with him on a continuous basis. ... This year, CAN has engaged over 65,000 caregivers across the state of Florida to better understand their priorities when it comes to hospice care and the benefits of integrated health systems, with over 28,000 of those being in Hendry, Lee, Pinellas, Glades, and connected counties.

A hospice nurse made a promise—and found homes for 1,300 pets  Miami Herald, Miami, FL; by Jen Reeder; 4/7/25Working as a hospice nurse, Joanne Bonicelli spent years offering comfort to dying people. Then, in 1998, a request from one patient changed her life. A young woman in her 40s had a fluffy white dog named Jasper, who never left her side while she was at Pikes Peak Hospice & Palliative Care in Colorado Springs, Colorado.  One day, the woman called Joanne to her bedside. “I don’t know where Jasper will end up or who will care for him when I am gone…it’s just too painful to bear,” she told Joanne as tears streamed down her face. “I can’t die in peace worrying what will happen to him…can you euthanize him in my arms as I pass?” The heart-wrenching request stunned Joanne. She asked a veterinarian about what they could do, and after meeting Jasper, the vet’s eyes welled with tears at the prospect of putting down a healthy dog. There has to be a better way, they both agreed. [Continue reading ...]