Literature Review

Study raises questions about GUIDE model’s helpfulness for caregivers of loved ones with dementia McKnights Home Care; by Adam Healy; 4/1/25 The Guiding an Improve Dementia Experience may need to be fine-tuned to better serve caregivers of those living with dementia, according to a new study published in Alzheimer’s & Dementia. The researchers identified 565 older adults and 555 caregivers eligible for GUIDE using data from the 2022 National Health and Aging Trends Study and National Study of Caregiving. They found that approximately half of GUIDE-eligible people with dementia received care from two or more caregivers, and about a third of these caregivers reported experiencing high caregiving strain. [Continue reading ...] 

What is death positivity? Healthline; by Sarah Choi, medically reviewed by Joslyn Jelinek, LCSW, ACSW, RDDP; 3/28/25 Death positivity involves acknowledging death as simply the final phase of life. It emphasizes open discussions around death and education on the options, rights, and choices surrounding it. ... The Death Positivity Movement was coined in 2011 by funeral director Caitlin Doughty, but the sentiment existed long before — the movement’s origins date back to the 1970s, drawing on the hospice movement. ... Elements of the Death Positivity Movement:

What to know about palliative and hospice care Association of Health Care Journalists (AHCJ); by Liz Seegert; 3/28/25 ... [Palliative care] is fundamental to health and human dignity and is a basic human right, according to the FXB Center for Health and Human Rights at Harvard.  When reporting on serious illnesses, journalists can help demystify palliative care and encourage more people in need to take advantage of it by clearly explaining the differences, and benefits, and incorporating anecdotes to further illustrate how these types of care make a difference in the lives of patients and their families. [Continue reading ...] Editor's note: Share this article--written for health care journalists--with your communications and marketing leadership, with your community newspapers' journalists, and your employee/volunteer educators. Too often, new hospice/palliative care employees at all levels of roles and responsibilities begin their roles without clear knowledge, comprehension, and application of distinctions between standard healthcare, palliative care, and hospice care.  

The COVID mistake no one talks enough about The Atlantic; by Sunita Puri; 3/25/25 Deaths in isolation have been treated as a painful memory, not as a problem that hospitals need to address. He was one of the few ICU patients whose face I saw in early 2021, when COVID raged through Los Angeles. As a palliative-care physician, my job was to meet, over Zoom, with the families of intubated patients to ensure that they had complete medical updates and to help them make difficult medical decisions on behalf of their loved one, particularly when that person faced death. But in a surreal departure from my usual practice, I’d never once seen these patients myself: At the time, to minimize exposure to COVID, the only people permitted to enter the ICU regularly were members of the ICU team. ... His wife told me that during his many previous illnesses, she had slept every night in his hospital room, making sure he asked for pain medications and watching movies with him to pass the time. “He fought harder to live when I was there,” she told me. [Continue reading ... full access may require a free trial or subscription]

Carolyn Hax: Does sibling love justify traveling to abusive mom’s deathbed?The Washington Post, Washington, DC; 3/24/25 Sister asks the letter writer to join her at their dying mom’s bedside — despite their PTSD-inducing childhoods. [The rest of this article may require a subscription to The Washington Post.]Editor's note: Even if you're not able to access the full article, what does this question stir in you? Be aware that many family caregivers (or simply family members) face complex, conflicted relationships with the persons they are tending--or in this case, even considering visiting or not. Be attuned to these common, everyday occurrences that your direct care interdisciplinary team members regularly navigate. What family systems' education and support do you provide for them?

Why aging parents make DNR choices before crisis strikes Rolling Out 25; by Khalil Best; 3/17/25The conversation typically begins quietly. ... An aging parent mentions their desire for a Do Not Resuscitate order—commonly known as a DNR—and the atmosphere in the room shifts. For many adult children, this moment arrives unexpectedly, triggering complex emotions ranging from denial to grief. Yet these discussions, uncomfortable as they may be, represent one of the most meaningful exchanges families can share. Understanding why many elderly parents choose to sign DNR orders in advance illuminates not just practical healthcare concerns, but deeper values about dignity, autonomy, and what constitutes a meaningful life.

Leverage collaboration, detailed notes to improve end-of-life care Home Helath Line; by MaryKent Wolff; 3/13/25 Educate your hospice staff on monitoring symptoms that could indicate a patient is nearing the end of life. Agencies that manage these symptoms early and take the time to prepare and comfort caregivers and families for the transition could see these successes reflected in their CAHPS Hospice survey scores. [Subscription required for more content.]

[Multi-cultural] Honouring traditions: Integrating cultural wisdom into palliative care - Saif Mohammed ehospice; by Saif Mohammed; 3/10/25[Personal Story] ... "Reflecting on this experience, I realize that caregiving is deeply embedded in tradition and culture, a natural extension of communal life." Caregiving is as old as humanity itself. One of the earliest known cases of palliative care dates back 45,000 years to Shanidar 1, a Neanderthal male found in present-day Iraq. His skeletal remains indicated severe injuries, yet he had survived for decades, suggesting that his community had cared for him. This example highlights that palliative care is a deeply human and historical practice, far predating modern medicine. Cultures around the world continue to recognize the importance of caregiving, often embedding it in traditions and religious beliefs. ... In some societies, the emphasis on independence can make caregiving more complex, as patients may refuse assistance to maintain self-sufficiency. ... Palliative care workers must be equipped to understand and respect the cultural traditions of the communities they serve. This requires training in cultural competence, which involves:

Tumor: why not use the warrior’s metaphor anymore taketonews; 3/7/25 ... The term "warrior" is often used to describe cancer sick people, referring to their strength, determination and ability to fight the disease. Although the intention is positive, docts and psychologists believe that this metaphor can generate negative effects on people with an oncological disease. The "warrior" label is not always appropriate and can have unwanted psychological effect on cancer patients. ... Use a language that does not reduce the patient to his struggle, but that enhances his entirety, including weakness, depression and pain, can contribute to a more human and respectful experience of care. ... [Click on the title's link for this further information below.]

Local care specialists launch first-ever ‘memory cafe’ in the Upstate WSPA Greenville, SC; by Simone Jameson; 3/3/25 Some Upstate care providers are bringing a new concept to the region they said will benefit families of adults with dementia. The Blake at Hollingsworth Park Assisted Living and Think Different Dementia are two partners behind a first of its kind ‘memory cafe’ in Greenville. ‘The Upstate Memory Cafe’ provides a community setting where people living with dementia and their caregivers can bond. ... Organizers told 7NEWS the ‘memory cafe’ offers a space where attendees play cards, make flowers and do other activities together. They said ten to twelve home health care and hospice representatives are present for each meeting and educate families on best dementia care practices, while offering them support and respite services.

Improving knowledge, confidence, and skills in perinatal bereavement care through simulation in baccalaureate nursing studentsState Nurses Associations - Kansas State Nurses Association; by Shelby True, MSN, RN; Libby Rosen, PhD, RN, IBCLC; Ashley Seematter MSN, RN; Jeri Harvey & Karly Lauer, MSN, RN; 2/20/25Many baccalaureate nursing programs throughout the United States thread concepts of bereavement and end-of-life care throughout their curriculum. However, a standardized education program for nursing students that increases the knowledge, confidence level, and application of skills a nurse must possess when providing perinatal bereavement care is often absent from the curriculum (Sorce & Chamberlain, 2019).  Perinatal loss can have a profound impact on parents and their loved ones, leading to emotional, psychological, physical, and spiritual trauma that deeply affects the lives of those involved. The nursing care each parent receives at the time of the loss may be remembered for years to come and is crucial to determining the nature of the grieving process (Sorce & Chamberlain, 2019). ... To improve the knowledge, confidence, and skill level of nurses providing perinatal bereavement care, a role-play perinatal bereavement simulation was developed and implemented in two Midwestern universities’ baccalaureate nursing programs in the maternal/newborn courses. Editor's note: Having served our hospice's Pediatrics Team for four years, the grief of parents, grandparents, siblings affected me deeply. I remember vividly a young mom unable to physically leave her baby's body with the hospital's nurse. Gently, we held her baby together. Over the course of about 15 minutes, the mother gradually shifted the weight of holding her baby over to me, before the hardest task of her life--leaving the hospital without her child. (It was Christmas week. I bawled when I got home.) Visiting them at the funeral home and after in their home, I experienced horrible, disenfranchised comments and attitudes from others (especially a local preacher). Leaders: tune into your pediatric hospice and palliative team members. What specialized support and education do they need? And, we never know what personal stories of perinatal bereavement those around us continue to carry. 

The number of family caregivers helping older US adults increased from 18 million to 24 million, 2011–22 Health Affairs; by Jennifer L. Wolff, Jennifer C. Cornman, and Vick A. Freedman; 2/25 The evolving composition and experiences of the family caregiver workforce have profound ramifications for public policy but are not well understood. Drawing on the linked National Health and Aging Trends Study and National Study of Caregiving, we found that the numbers of family caregivers providing help to older adults increased by nearly six million between 2011 and 2022, rising from 18.2 million to 24.1 million. ... For family caregivers as a whole, challenges persist, and for those assisting people with dementia, tailored surveillance and effective support programs are needed.

Sovereign Hospice empowering young adults to understand hospice Fox-40; Press Release by Sovereing Hospice; 1/20/25 Sovereign Hospice ... in Aubrey, Texas, is shedding light on the essential role young adults play in understanding and supporting hospice and palliative care services. Through their latest blog, “Spreading Insight: What Young Adults Should Know About Hospice & Palliative Care,” the organization aims to debunk myths, explain key differences between hospice and palliative care, and emphasize why early awareness is critical for families navigating complex health journeys. Many young adults assume caregiving responsibilities earlier than expected, often balancing personal and professional commitments. Studies show that nearly 1 in 4 adults aged 18–34 provide care for a loved one, underscoring the need for awareness about hospice and palliative care.