Literature Review

Improving community-based palliative care explanations: Insights from persons declining servicesAmerican Journal of Hospice & Palliative Care; by Kira G Sheldon, Kathryn H Bowles, Elizabeth A Luth; 8/25Beneficiaries and caregivers had mixed understandings of palliative care, including: no knowledge, belief that it was the same as or pre-hospice, and accurate, but often one-dimensional understandings of it. Participants recommended providing individualized, tailored explanations focused on the person's health concerns in simple language with follow-up materials to improve engagement with palliative care. Small adjustments to how palliative care is explained may increase understanding among older adults and caregivers, particularly among those with limited or inaccurate knowledge. Among those familiar with palliative care, providing accessible and clear explanations customized to the person's specific care needs can further broaden understanding and increase perceived relevance.

From panic to purpose: Tulane student’s bell project brings hope to cancer patients nationwide CBS WWL-4, New Orleans, LA; by Meg Farris; 9/8/25 A little girl whose mother was diagnosed with a very serious illness could have never dreamed that several years later, she'd be helping patients across the country and beyond. ... Belle Spar vividly remembers, ... “I had a panic attack, hysterically crying. I thought I was going to lose my mom. I was 12. I was terrified ...” Belle Spar, 21. [The ritual of ringing the bell at the end of cancer treatment became a symbol of hope.] That 12-year-old ... is now a senior at Tulane University. During those nine years as an adolescent, she and her sister, Alexa, accomplished something remarkable. They have raised money to donate 130 bells, so far, to radiation and transplant centers around the U.S., and even in South America.

Behavioral symptoms in patients with dementia are associated with care partner abusive behaviorsJournal of Elder Abuse & Neglect; by Emily LeRolland, Francesca Falzarano, Karen L. Siedlecki; 8/25Abuse of older adults with dementia is an increasingly prevalent public health concern in the United States. The current study examined whether care recipient behavioral symptoms (e.g. aggressive or agitated behaviors) predicted abusive behaviors by care partners. Results indicate that most participants reported engaging in at least one abusive behavior toward their care recipient. Behavioral symptoms in care recipients were a significant predictor of abusive behavior perpetrated by the care partner, even after controlling for a large number of covariates. Care partner depressive symptoms significantly mediated the relationship between care recipient behavioral symptoms and care partner abusive behavior. Our results suggest that physician screening for depression in care partners and referral to appropriate resources may be one avenue for decreasing the risk of abuse toward care recipients. 

Issues in developing multilingual graphics-based digital caregiver guides for dementia careDiscourse, Context & Media; by Boyd H. Davis, Margaret Maclagan, Meredith Troutman-Jordan; 8/25To increase the opportunity to educate caregivers for persons with dementia, particularly the nearly 40% of migrant healthcare workers emigrating to the US, we have chosen an adaptation of graphic medicine as a means of presenting these workers with conversations about dementia care in two formats of ‘mini-comics’: photo-based and cartoon. Our graphic Caregiver Guides are a form of mediated digital discourse that incorporate both words and pictures, and thereby support caregivers as they draw immediately useful guidance from online materials when offering daily off-line care. Each guide covers a situation that occurs commonly as caregivers care for people living with dementia.

Reimagining support for family caregivers and their loved ones Duke University School of Medicine; by Bernadette Gillis; 8/11/25 ... Duke population health researchers are gathering evidence to show what type of care leads to the best physical and mental health for the care recipients, and how to best support the caregivers themselves.  ...

Creating user personas to represent the needs of dementia caregivers who support medication management at home: Persona development and qualitative studyJMIR Aging; by Anna Jolliff, Priya Loganathar, Richard J Holden, Anna Linden, Himalaya Patel, Jessica R Lee, Aaron Ganci, Noll Campbell, Malaz Boustani, Nicole E Werner; 7/25Caregiver-assisted medication management plays a critical role in promoting medication adherence and quality of life for people living with Alzheimer disease or related dementias (ADRD). Caregivers in this study demonstrated a range of characteristics and values that informed their approach to medication management. They used a combination of technology-based strategies and strategies situated in their physical environments to manage medications. The personas created can be used to inform interventions, such as digital tools, that address caregivers' unmet needs.

Burnett Center restores labyrinth as community healing space Southern Maryland News, LaPlata, MD; by Aamaly Hossain; 7/21/25 On a wide stretch of land, nestled between Barbara Burnett’s two homes and a weathered barn, stands the Burnett Center for Hope and Healing — and beyond it, is its labyrinth. Once known as Calvert Hospice, the center is now part of the Hospice of the Chesapeake and transformed from a patient-filled facility into a community space centered solely on healing. “We’ve reimagined it into a center for everyone in the community experiencing any kind of loss, grief, illness — whatever they need to heal,” Heather Conner, volunteer service manager with Hospice of the Chesapeake, said.

Understanding the influence of culture on end-of-life, palliative, and hospice care: A narrative review Cureus; by Veena Hira, Sainamitha R. Palnati, and Saajan Bhakta; 7/15/25 ... This narrative review included 25 relevant publications related to influence of culture and patient demographics on end-of-life care, hospice, and palliative care. As each culture has its own unique views on death and dying, it is crucial to note these cultural differences when assisting with end-of-life care to best align with patients’ beliefs and values. Themes such as cultural barriers, communication preferences and family roles emerged from the publications. ... This narrative review offered a snapshot of how culture influences end-of-life decisions worldwide, specifically in East Asia, South Asia, the Middle East, Europe, and North America, while highlighting themes of 1) truth disclosure and communication preferences, 2) patient autonomy and family involvement, and 3) perception of illness and death. ... Central to providing effective end-of-life care is open, culturally tailored communication that respects patients’ and families’ values, facilitated through shared decision-making discussions. ... Ultimately, integrating cultural understandings of death and dying into end-of-life care planning is not simply a matter of sensitivity, but it is a matter of quality and equity. Health systems must not only provide choices but ensure those choices are intelligible, meaningful, and respectful within the patient’s worldview.Editor's Note: Pair this today's post, My health and my politics walk into a doctor’s office …

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. 

5 ways to have a ‘good death’ — including one of the biggest mistakes people make New York Post; by Reda Wigle; 7/3/25 No one gets out of life alive — but one expert says we can take steps to make sure we leave the earthly plane riding the high of a “good death.” “While 80% of people want to die at home surrounded by loved ones, only 30% actually do,” End Well founder Dr. Shoshana Ungerleider told The Post. “This massive gap reflects our system’s inability to honor what patients actually value.” As our cultural relationship to mortality has changed, Ungerleider notes that we have become disconnected from the process of death and, in turn, fail to plan appropriately for it. But if you’re not sure where to start, she has a helpful checklist of everything you should be doing to avoid a “bad death.”

[United Kingdom] Grandson to run 120km over 24 hours for hospice BBC News, Bristol, UK; by Clara Bullock; 6/28/25 A 31-year-old man is training to run 120km (75 miles) in 24 hours, in memory of his grandmother and to raise awareness of palliative care. Mary Lerway died in October 2023 and now Josh Galea, her grandson who lives in Bristol, is running the equivalent of almost three marathons to support St Peter's Hospice. Mr Galea, who became Ms Lerway's informal carer when her health declined, said: "Unfortunately, the end of my Nan's life was very difficult, not only for her, but also for the wider family who had to care for her. ... Ms Lerway was first seen by nurses from St Peter's Hospice 48 hours before she died. Mr Galea said that within an hour of them arriving the whole situation improved and the family could "breathe a sigh of relief"."It put us at ease knowing that she was being looked after, and it allowed us to say goodbye to her peacefully," he said.

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. ...

Nurse practitioners step in as geriatrician ranks shrink The Washington Post; by Jariel Arvin; 6/15/25 On Fridays, Stephanie Johnson has a busy schedule, driving her navy-blue Jeep from one patient’s home to the next, seeing eight people in all. Pregnant with her second child, she schleps a backpack instead of a traditional black bag to carry a laptop and essential medical supplies ... “Our patient isn’t just the older adult,” Johnson said. “It’s also often the family member or the person helping to manage them.” Johnson isn’t alone. Today, nurse practitioners are increasingly filling a gap that is expected to widen as the senior population explodes and the number of geriatricians declines. The Health Resources and Services Administration projects a 50 percent increas in demand for geriatricians from 2018 to 2030, when the entire baby boom generation will be older than 65. ...