Literature Review

As the US ages, a growing movement aims to care for caregiversJAMA Network; by Virginia Hunt; 6/20/25People caring for a family member with special needs such as a disabled child, a convalescing partner, or an aging parent often feel alone—but they aren’t. In fact, up until the COVID-19 pandemic, unpaid family caregivers made up nearly 1 in 5 US adults, or about 53 million people. Experts estimate that this number has since grown. It certainly has for people supporting older adults: between 2011 and 2022, this subset of caregivers increased from 18.2 million to 24.1 million, according to a recent study.

Short notice, long love: A hospice wedding full of heart Citrus County Chronicle, Inverness, FL; by Mike Arnold; 6/16/25 Brendan Malone and Vanessa Rodriguez made a snap decision that would change their lives – and touch the hearts of everyone around them. The couple were driving up from Estero in the early afternoon of June 5 to visit Malone’s father, Michael “Big Mike” Malone, who had recently moved into Citrus Health and Rehab in Inverness and was also receiving care from Vitas Hospice. [Already engaged,] ... they made the decision to get married the next morning, at Citrus Health and Rehab. There were no tuxedo fittings, no cake tastings, no invitations sent. There was no time. There were flowers, guests, toasts, bubbles – and love. And “Big Mike” had a front row seat. Brendan Malone didn’t want to get married without the man who had been his biggest supporter by his side. ... What followed was a whirlwind of compassion, planning, and action from the staff at the nursing facility and the local hospice team. Within hours, they coordinated decorations, arranged courtyard seating, and made sure Michael could be present in his wheelchair for the ceremony.

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. ...

Hospice a saving grace during our hardest time Pikes Peak Courier; by Mary Lovato; 6/11/25 ... I recently lost the two most important men in my life. My husband passed away from bladder cancer and within 6 months, my brother passed away from COPD. The individuals who worked for Hospice and helped us deal with the end of life of each of these loved ones were amazing. It wasn’t just the medical personnel, it was also the person who came to the house to set up the required equipment, it was the person who bathed the patient, it was the social worker, it was the person who offered spiritual guidance, it was even the person who in an emergency, delivered medicine in the middle of the night.

Nursing home is pressuring my mother-in-law to enter hospiceAging Care - Caregiver Forum - End of Life - Questions; question posed by "concerned8"; 6/12/25 I am her Health Care Surrogate but as they won't declare her incompetent it has not come into effect. I believe the home's intent is to prevent me from making the decision regarding hospice and instead to pressure her to enter it in various ways. ... I am not anti-hospice and expect her to enter it in the near future, but want that to be my decision, not the home's (even if it's portrayed as hers).  ... [An answer from another reader" Our family has only had bad experiences with three different hospice companies. Contrary to what most people believe, many patients are placed on hospice for free equipment and free services. I was told this by more than one hospice worker.Editor's Note: This post raises numerous troubling perceptions, with descriptions of poor hospice experiences. 

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.

Families, volunteers share stories of finding peace through hospice: Hospice "allowed her to just be a daughter to her father as he was dying" Salina Post; by Cristina Janney, Hays Post; 6/29/24; posted in our newsletter 7/2/24This is a two-part series on hospice care in northwest Kansas. Dalene Juenemann and her father, Dean, had to make the difficult decision to enter hospice care after he was diagnosed with bladder cancer. “He was just such a social guy and someone was in a couple times a week,” she said. “They were checking in on him and it was that security blanket he had.” ... He didn’t want to go through aggressive chemo and he didn’t qualify for a bladder removal because of his age. “He chose quality of life,” she said. "It was that final decision that we are done with everyone wanting a piece of me. I'm just going to enjoy life," she said. Dalene's father, Dean Shearer, was a patient of NWKareS, Hospice of Northwest Kansas, which serves 16 counties from Interstate 70 to the Nebraska border and Trego County to the Colorado border. ... She said the extra care hospice offered allowed her to just be a daughter to her father as he was dying. [Click on the title's link to continue reading stories from families and volunteers at NWKAreS.]

New Hampshire woman’s father dies in hospice care [in fire evacuation zone] when California fires broke out CBS News WBZ, Boston, MA / YouTube; 1/15/25, published in our newsletter 1/15/25Just two hours before the fire evacuation--Merle Fetter--Barbara's husband of 64 years died in Royal Oaks Hospice Care, with Barbara holding his hand until the end . … As the fire moved through Altadena towards Monrovia Barbara was forced to leave Merrill's body, unable to be evacuated. ... [Daughter in New Hampshire:]  “I didn't know where my mother was. I didn't know what happened to my father's body.” Barbara's daughter—Joy—thousands thousands of miles away in New Hampshire couldn't fly to Los Angeles until Friday. When she finally landed she received a reassuring call from Royal Oaks her mom was OK and her father's remains taken to the coroner's office. Staff feel like residents here are their family. 

Couple marry in ICU an hour before bride’s father takes his last breath Our Community Now, North Providence, RI; by OCN staff; 8/22/24, published in our newsletter 9/1/24A Rhode Island hospital held an emergency wedding that had to be performed before the bride’s father died from muscular dystrophy. Sabrina Silveira-DaCosta says her father, 58-year-old Frank Silveira, was Portuguese-born and raised, a serious chef and a five-star dad. ... With Silveira’s health rapidly declining, his family realized he wasn’t going to make it his daughter’s wedding on Sep. 7, so plans changed. “Everyone was able to bring the wedding to him in the hospital, and he got to walk me down the aisle,” Silveira-DaCosta said. From his intensive care unit bed, Silveira escorted his daughter down the hospital hallway Monday into the hands of her fiancé, Sam DaCosta. ... Silveira-DaCosta’s father died about an hour after he walked her down the aisle. “It’s very complex. It’s a lot of emotion. Our community hospitals don’t get enough credit because any big hospital couldn’t have done this for us,” she said.

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.

Caring for Gladine: A Las Cruces man's account of caregiving for his wife with dementia Las Cruces Sun News; by Leah Romero; 6/10/25 When Gladine Lindly was diagnosed with dementia in 2018, she and her husband Steve Gaskell decided to manage at home. But as Lindly’s dementia progressed, Gaskell quickly realized he needed help taking care of her. ... “She said, ‘I want you to be my caregiver. ... I don’t want to go into a home or facility,’” Glaskell recalled. “I proceeded to walk into the doors of Home Instead to apply for a job because I wanted to learn how to be a caregiver. Never done anything like that before.” ...  By September 2024, Lindly ... was placed on hospice care. By December, the hospice nurse told Gaskell it was time for family and friends to start saying their goodbyes.  ... [Gaskell described her death,] "And it was as peaceful as you can imagine. And that was…this sounds crazy to say, but that was probably the easiest part of the whole process.” Lindly passed on Jan. 7, 2025 at the age of 77. [Go to the source article for more of this inspiring story about caregiving through dementia.]

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.

Provider MiraSol Health launches new Behavioral Health Program Hospice News; by Jim Parker; 6/3/25 MiraSol Health has launched a new behavioral health program designed to amplify emotional and psychological support for its hospice and palliative care patients. Branded as Rays of Hope Behavioral Health, the program offers individual and group therapy sessions, both in person and via a secure telehealth platform. Through Rays of Hope, MiraSol’s licensed therapists will help address anticipatory grief, caregiver stress, loss and other struggles that patients and families face during a time of chronic, serious or terminal illness.