Literature Review

Musical organization brings comfort to hospice patients CBS 19 News, Charlottesville, VA by Jadyn Howard; 8/14/25 The Front Porch, a nonprofit music organization, partners with Hospice of the Piedmont to give musical performances to patients in their final months. "Mom doesn’t know her grandchildren or great-grandchildren, but Clara sings the song and words come out it’s beautiful so something about the brain remembers music," said Beth Johnson, daughter of a patient at Linden House for Assisted Living.  Clara George is a Front Porch musician who performs for Johnson's mother every Thursday. "People who have dementia a lot of times they can felt isolated or lonely or agitated and when I start playing with them I see their hands start to clap and sing along," said George.

[UK] 'Dementia has got two faces': grief as an experience of holding on and letting go for people living with primary progressive aphasia and posterior cortical atrophyAging and Mental Health; Claire Waddington, Henry Clements, Sebastian Crutch, Martina Davis, Jonathan Glenister, Emma Harding, Erin Hope Thompson, Jill Walton, Joshua Stott; 8/25Research on grief in people with primary progressive aphasia (PPA) and posterior cortical atrophy (PCA), is limited, despite the unique challenges these individuals face due to lack of understanding of their condition, younger age at onset and atypical symptom profile. The current study explores the losses people living with PPA or PCA experience and what helps to navigate these losses. The impact and navigation of loss is reflected across five interconnecting themes: what I have lost, am losing and will lose, shared and unique sense of loss, balance between what is lost and what remains, changes in relationships and what helps in navigating loss. These findings will be used alongside existing grief theory and interventional frameworks to develop a psychosocial intervention for people living with dementia.

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.

Finding the communication sweet spot: Strategies promoting personhood in conversations between individuals with dementia and their family membersJournal of Family Communication; by R. Amanda Cooper, Chizobam Nweke, Hannah Brocksmith; 7/25... this study explored the various ways through which family members promote the personhood of their loved ones with dementia. Personhood was promoted by reminding the people with dementia of their identities, encouraging them to share their thoughts, assessing and adjusting to their conversational needs, and cultivating relational connections with them. Some behaviors were inconsistent with the tenets of person-centered communication and involved underaccommodation or overaccommodation. The findings reveal potential strategies and pitfalls of promoting personhood within the family caregiving context.

Hearing loss, loneliness may contribute to cognitive decline in older adults McKnights Senior Living; by John Roszkowski; 7/28/25 Hearing loss and loneliness can contribute to dementia in older adults, and simple interventions to address hearing loss, such as hearing aids, may reduce cognitive decline in some cases, new research finds. ... Results of the study showed that higher levels and worsening self-reported hearing impairment were associated with steeper decline in episodic memory issues and executive functioning (verbal fluency). Further, the researchers found that individuals who were not socially isolated but still felt lonely saw their cognitive decline accelerate if they were deaf.

Complications of gastrostomy tube placement in patients with dementia: A national inpatient analysisSurgical Endoscopy; Spencer R. Goble, Thomas M. Leventhal; 6/25Gastrostomy tubes have not been shown to improve long-term outcomes in patients with dementia, yet the risk of short-term complications have not been well characterized in this population. Conclusions: Gastrostomy tube placement complications do not appear to be increased in patients with dementia. However, those who undergo gastrostomy tube placement are less likely to discharge to home which has important quality of life implications.

Carolina Caring launches specialized program to support dementia patients Carolina Caring, Newton, NC; Press Release; 7/3/25 On Tuesday, July 1st, 2025, Carolina Caring launched a new Dementia Care Program designed to provide expert support and services to patients with a dementia diagnosis. As part of this launch, Carolina Caring also announced approval from the Centers for Medicare & Medicaid Services (CMS) to participate in the “Guiding an Improved Dementia Experience” (GUIDE) Model of Care, a national initiative which seeks to improve quality of life for dementia patients. The expansion of this Dementia Care Program builds upon years of Carolina Caring’s internal development and collaboration with universities and professional partners. The program is now accepted as a National Partnership for Healthcare and Hospice Innovation (NPHI) Dementia Care Program.

Gentiva unveils 3 disease-specific hospice programs Hospice News; by Jim Parker; 7/3/25 Gentiva has set in motion three new disease-specific hospice programs branded as Cancer Comfort Care, Dementia Comfort Care and Cardiac Comfort Care. The three new suites of services have launched in select markets with plans for national expansion. They are designed to provide tailored services to serve the unique needs of terminally ill patients suffering from cancer, dementia or cardiac conditions, such as heart failure and other diseases. Those three types of diseases are among the most common diagnoses for hospice patients.

New online dementia care resources available for assisted living communitiesMcKnight's Senior Living; by Kimberly Bonvissuto;6/20/25Kimberly BonvissutoA growing number of people are living with dementia and receiving services in assisted living communities as well as in homes in the greater community. Although some states have requirements, some assisted living communities and home care settings may lack the formal dementia care standards required to be followed by nursing homes, so a nonprofit group has released a new toolkit of online resources to support people living with dementia and their caregivers. “It always bothered me that we were not paying attention to the growing number of people living with dementia outside of nursing homes,” Richard Mollot, executive director of the Long Term Care Community Coalition, said Tuesday during a webinar introducing the organization’s new Dementia Care in the Community toolkit. “Although the nursing home standards do not apply in assisted living and home care, every individual deserves the quality of care and services they need to live comfortably and with dignity.”

Families demand end to Medicare waiting period for early-onset Alzheimer’s patients Washington Examiner; by Elaine Mallon; 6/15/25 Jason Raubach was diagnosed at 50 years old with early-onset Alzheimer’s disease — a diagnosis that affects nearly 200,000 Americans. He received the diagnosis in 2018, completely upending life for his family. His youngest child was just a freshman in high school. ... Shortly before receiving an official diagnosis, Jason Raubach lost his job, having to move his family onto a consolidated omnibus budget reconciliation act health plan, or COBRA plan, which allows a person to keep their health insurance even after losing their job. “It wasn’t cheap,” Elizabeth Raubach said.However, once diagnosed, Jason Raubach had to wait two and a half years before he could receive coverage under Medicare, health insurance for those 65 years and older or those with qualifying disabilities. But Elizabeth Raubach, along with dozens of other caretakers for people diagnosed with Alzheimer’s, called on Congress in a letter to eliminate the 29-month waiting period required for those under the age of 65 to receive coverage under Medicare. ...

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.

Four Seasons offers virtual dementia training Four Seasons, Flat Rock, NC; Press Release; 6/10/25 Four Seasons is excited to now offer Virtual Dementia Training to the community! The Virtual Dementia Tour (VDT) is a patented, ground-breaking, and evidence-based method of building a greater understanding of dementia. This training will be provided free for community groups or faith-based communities. There is a cost for external healthcare staff training. Learn more or schedule a training by contacting Mary Jo Powers (Four Seasons Director of Home Care) or Jenny Martin (Four Seasons Home Care Recruitment & Training Coordinator) at 828.696.0946 or HomeCareVM@FourSeasonsCFL.org. ... “Virtual Dementia Training helps caregivers better understand what their patients’ and loved ones’ lives are like. The training helps foster empathy and patience to ensure the best care and quality of life for those living with dementia. We are honored to bring this impactful training to our communities,” says Dr. Ruth Thomson, DO, MBA, HMDC, FAAHPM, FACOI, Four Seasons Chief Medical Officer.

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.]