Literature Review

The Family Caregiver Act—Safeguarding the human care chainJAMA Pediatrics; by Eli Y. Adashi, I. Glenn Cohen; 9/25On August 9, 2024, Jay Robert Pritzker, governor of Illinois, signed into law House Bill (HB) 2161 (Public Act 103-0797), likely the nation’s leading caregiving antidiscrimination legislation. The new law, which took effect January 1, 2025, prohibits employment discrimination against individuals saddled with family caregiving responsibilities. It is by dint of the enactment of HB 2161 that Illinois became the sixth state or district to legally require some form of this employee protection. Alaska, Delaware, Maine, Minnesota, New York, and Washington, DC, precede it, though some of these limit their protection to parents. Moreover, HB 2161 defines personal care as activities wherein a family member assumes responsibility for one or all of the basic needs of an ailing relative, replete with the provision of emotional support and/or transportation to medical appointments. A covered family member may include a child, stepchild, spouse, domestic partner, sibling, parent, mother-in-law, father-in-law, grandchild, grandparent, or a stepparent.Assistant Editor's note: "The Human Care Chain"--what a wonderfully descriptive title this is to describe the Illinois law. Those words evoke strong images of connectedness, humanness, caring, compassion, dedication, goodness, and love. As end-of-life and serious illness care providers, we understand the tremendous value, comfort and necessity of The Human Care Chain.

[South Africa] Capturing the comfort and care of palliative care this World Hospice and Palliative Care Day Good Things Guy, South Africa; by Nothando Mthembu; 10/7/25 It’s said that a picture is worth a thousand words, and it is upon this very adage that the Association of Palliative Care Centres (APCC) of South Africa has launched a powerful photographic campaign to capture the dignity, comfort and support that patients facing life-threatening illness receive and deserve through the provision of palliative healthcare services. With the hope of showcasing the impact of palliative care through real-life stories and images, the ‘Through the Palliative Care Lens’ campaign aligns with the theme for World Hospice and Palliative Care Day 2025 (WHPCD2025): ‘Universal Access to Palliative Care’.

Doyel: I didn't know how strong and kind my special Mom was. Not until she started dying. Indianapolis Star, Indianapolis, IN; by Greg Doyle; 10/1/25 The last time we talked, I told my mom the truth: I’d missed just how wonderful she was. Make no mistake, I knew she was wonderful. Kind, considerate, strong – she checked all the best boxes. And generous? Mom’s the most generous person I’ve ever known, and I’ve known it for years. But I didn’t know just how generous she was. Not until she started dying. Didn’t know how strong she was, either. Not until she was so weak she couldn’t stand on her own two feet. That’s when I finally saw it. ...

Study provides new insight into loneliness among home care recipients McKnights Home Care; by Paul Katz, MD and Barbara Resnick, PhD; 9/22/25 ... A team of international Investigators, led by researchers at the University of Waterloo, recently reported on the link between loneliness and mortality among home care recipients in Canada, Finland and New Zealand. The study can be found in the July issue of the Journal of the American Medical Directors Association (Vol 26 (7) 105687 July 2025). ... Home care recipients may be more prone to loneliness, given mobility and sensory problems that limit engagement in the community.  ... Interestingly, investigators noted that individuals with less informal care had the highest rates of loneliness. An explanation may be that those with less complex health needs requiring  less support from family members may lead to more social isolation.

Americans choosing cremation at historic rates, NFDA report finds National Funeral Directors Association (NFDA), Brookfield, WI; Press Release; 9/18/25 Americans are choosing cremation more than ever before, setting a new milestone in funeral service trends for 2025. According to the National Funeral Directors Association (NFDA) 2025 Cremation & Burial Report, the U.S. cremation rate will reach 63.4% this year, more than double the projected burial rate of 31.6%. These shifting preferences reflect lasting changes in family priorities, funeral profession practices and cultural attitudes. Key 2025 Report Highlights: 

Fulfilling end-of-life dreams: A scoping review of bucket lists in palliative and hospice care Palliative Supportive Care - Cambridge University Press; by Swasati Handique, Michael Bennett and Scott D Ryan; 9/12/25 Results: Four major themes were established using thematic content analysis: (1) impact on holistic well-being, (2) role of family in wish fulfillment, (3) cultivation of gratitude, and (4) collaborative leadership in wish fulfillment. In wish fulfillment, the results significantly pointed to the need for more intricate evaluation among patients and interventions that cover beyond the physical aspect. Significance of results: Palliative and hospice care settings should work toward securing sustainable funding for structured wish-fulfillment programs to address existing accessibility gaps and further enhance the holistic nature of care in these settings. Editor's Note: For hospice organizations that can receive donations, setting up a Wish/Bucket LIst fund makes for a meaningful, easy-to-demonstrate ROI on donated gifts. You need to have some type of discretionary review/approval process in place, with assurances of confidentiality when important to the person and/or family.

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.