Literature Review
All posts tagged with “General News | Caregiver News.”
The spectrum of end-of-life experiences: A tool for advancing death education
05/04/24 at 02:05 AMThe spectrum of end-of-life experiences: A tool for advancing death educationOmega; by Shared Crossing Research Initiative; 3/24 Abstract: Studies on end-of-life experiences (ELEs) suggest that caregivers and loved ones of dying patients also have ELEs, though these are rarely explored. This article introduces the Spectrum of End-of-Life Experiences (SELE) as a descriptive list of types of ELEs reported by all members of the care unit, including dying patients, their caregivers, and their loved ones. We applied SELE towards identifying ELEs reported by 143 caregivers and loved ones and successfully identified every experience. Interviews revealed that participants viewed their ELEs as profound communicative events, yet a substantial minority also reported struggling to name and process these experiences. We propose that SELE be included in death education to raise awareness about ELEs that can occur within the care unit, and we suggest that SELE has additional applications, including use as a prognostic aid in end-of-life care and as a therapeutic aid for bereavement support.
The cost of dying is going up, leaving some Florida families scrambling
05/02/24 at 03:00 AMThe cost of dying is going up, leaving some Florida families scrambling Tampa Bay Times; by Lauren Peace; 5/1/24 Christina Nall sat in the hospital parking lot gasping for air. Four hours earlier, her father, Bill Burke, had been alive. He’d eaten Golden Grahams for breakfast and wrapped his grandkids in tight hugs before school. He was putting on his shoes to leave the house when Nall, 33, found him slouched over on the couch. Doctors said it was a blood clot. He was 56 years old. Now, outside the Zephyrhills hospital, a fog of grief hung over Nall as the funeral director’s words cut into her. To get her dad back to his home in Missouri would cost upward of $2,000. The service and burial he wanted would cost another $6,000.
Millions of American kids are caregivers now: ‘The hardest part is that I’m only 17’
05/01/24 at 03:00 AMMillions of American kids are caregivers Now: ‘The hardest part is that I’m only 17’The Wall Street Journal; by Clare Ansberry; 4/27/24An estimated 5.4 million children help care for relatives, as families can't afford or find other in-home care. ... Leo Remis gos to high school, plays videogames, and helps take care of his disabled mom. ... More than 70% of young caregivers are caring for a parent or grandparent, according to a caregiving report. Many miss school, feel more isolated and worry about the future. Juggling homework with cooking and giving injections can be overwhelming and lead to anxiety.Editor's Note: Access to this article might require a subscription. Click here for alternate access.
CC Biz Buzz: Death, taxes and planning
04/29/24 at 03:00 AMCC Biz Buzz: Death, taxes and planning Columbia Daily Tribune; by Mary Dorn; 4/24/24 This column is one that I never really wanted to write, but, in hindsight, it is likely one of the most important that I will write. Monday, April 15, 2024, the dreadful “tax day” was upon me, and I was at a local funeral parlor making the final arrangements for my spouse and partner of 23 years. I kept thinking of the famous quote by Benjamin Franklin, “In this world, nothing can be said to be certain except death and taxes.” ...
A leading authority in senior care and services: Seniors Blue Book
04/25/24 at 03:00 AMA leading authority in senior care and services: Seniors Blue Book Iowanews Headlines; 4/23/24Seniors Blue Book, a trusted name in senior care and services, has been recognized as a leading authority in the industry. With a dedication to improving the lives of seniors and their families, Seniors Blue Book has consistently demonstrated its commitment to providing high-quality, reliable information and resources for the senior community. ... For over 40 years, Seniors Blue Book has been at the forefront of the senior care and services industry, offering a wide range of resources and solutions designed to improve the lives of older adults and their families.
The cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden
04/25/24 at 03:00 AMThe cancer caregiving burden trajectory over time: varying experiences of perceived versus objectively measured burden The Oncologist, by Laura A Siminoff, Maureen Wilson-Genderson, Marcin Chwistek, Maria Thomson; 4/23/24 Conclusions: Cancer caregiving is dynamic; [caregivers] CGs must adjust to the progression of the patient's disease. We found an association between subjective and objective burden both within and between CGs. Black CGs were more likely to report lower subjective burden compared to their White counterparts. More detailed investigation of the sociocultural components that affect caregiver experience of burden is needed to better understand how and where to best intervene with targeted supportive care services.
Operator hopes to expand residents’ digital literacy with unique tech concierge program
04/25/24 at 02:00 AMOperator hopes to expand residents’ digital literacy with unique tech concierge program McKnights Senior Living, by John O'Connor; 4/22/24Beginning in June, residents in some BHI Senior Living communities will be able to take advantage of a unique tech concierge program. For residents, the new service will feature on-demand tech support, alongside virtual assistance, in-home appointments and a curriculum of tailored enrichment classes and training sessions. For the operator, the program will deliver immediate tech support while also gathering and analyzing data that can be used to inform future technology investments and strategic moves.Editor's Note: How might you adapt this creative service for the persons you serve? What differences might it make in patient care? In hospice caregiver/family satisfaction? What tech support do you have for your staff, especially when they are making home or other in-the-field visits? Relating this to today's articles on the importance of "trust" and "nurses' negativity about AI," do your innovative technologies improve or impede the patient/family's needs and experiences with you?
Care for Alzheimer's on Medicaid is unorganized, frustrating, inhuman
04/18/24 at 03:00 AMCare for Alzheimer's on Medicaid is unorganized, frustrating, inhumanThe Indianapolis Star, by Darcy Metcalfe; 4/14/24What it is like to die of Alzheimer’s in America? Without a doubt, it is nothing as it is portrayed on NBC’s hit series This is Us. At the end of this series, the character Rebecca dies from Alzheimer’s and falls peacefully asleep, snuggly tucked in her warm bed at home, surrounded by family and 24-hour skilled nursing care. Throughout the six seasons of This is Us, I simultaneously witnessed my father’s slow dying from Alzheimer’s in a reality that was worlds away from Rebecca’s. ...
NHPCO's CaringInfo program launches new consumer blog, insights
04/17/24 at 03:00 AMNHPCO's CaringInfo program launches new consumer blog, insights NHPCO Press Release; 4/15/24 CaringInfo, a program of the National Hospice and Palliative Care Organization (NHPCO), has launched a new consumer blog, Insights, offering timely and practical content on serious-illness care and services from a variety of perspectives in both English and Spanish. ... CaringInfo also offers more information about advance directives and free advance directives and instructions for all 50 states plus Puerto Rico and Washington DC in both English and Spanish, downloadable as PDF files.
Readers share stories of their loved ones’ deathbed visions
04/12/24 at 03:00 AMReaders share stories of their loved ones’ deathbed visions DNYUZ; 4/10/24 When I started reporting “What Deathbed Visions Teach Us About Living,” about the visions, often of loved ones, that some people have in the final stretches of their lives, I had no idea just how universal the experience was. But within minutes of the story’s publication, readers took to the comments section to post their own memories of having witnessed the phenomenon. The stories were rich, deeply personal, and seemed to confirm something that the researcher featured in my story, Dr. Chris Kerr, knew in his years of studying such visions: they bring peace to the dying and solace to the living. Family members wrote in with stories of watching loved ones have visions, as did health care workers, who had years of experience witnessing them. [Click on the article's title to read more stories.]
'I just want to take everybody fishing': Dose of the Coast provides a much needed respite
04/11/24 at 03:30 AM'I just want to take everybody fishing': Dose of the Coast provides a much needed respite Nola.com - Louisiana Inspired, by Jack Barlow; 4/9/24 Dealing with a serious illness is all consuming. One nonprofit strives to give people suffering life-altering illnesses a much-needed break. Baton Rouge-based Dose of the Coast takes people dealing with cancer and other similar illnesses out for a day on the water. ... The genesis of the organization began in 2014, with a fishing trip for Ashley Ferguson's father, Donald Walker. ...
Family caregivers can help shape the outcomes for their loved ones – an ICU nurse explains their vital role
04/11/24 at 03:00 AMFamily caregivers can help shape the outcomes for their loved ones – an ICU nurse explains their vital role The Conversation, by Beth Daley; 4/9/24 The floor nurse had just told me that my new patient – let’s call her Marie – would not stop screaming. ... No matter how much I comforted her, ... she was screaming for her daughter, April, who was on her way. ... As a seasoned bedside critical care nurse, I see firsthand the benefits that family caregivers bring to patient care in the hospital. I also witness the emotional stress that caregivers experience when their loved one comes to the ICU.
Odom co-authors American Cancer Society Caregiver Services Guide
04/11/24 at 03:00 AMOdom co-authors American Cancer Society Caregiver Services GuideThe University of Alamaba at Birmingham School of Nursing, by Laura Gasque; 4/9/24To help meet the needs of the growing number of people caring for family members and friends with cancer, the American Cancer Society has released the guide “Developing Caregiver Clinical Services: A Toolkit for Cancer Centers and Staff,” co-authored by University of Alabama at Birmingham School of Nursing Associate Professor and holder of the Doreen C. Harper Endowed Professorship in Nursing, J. Nicholas Odom, PhD, RN, ACHPN, FAAN. According to the ACS, this toolkit is the first of its kind to provide the tools and resources that oncology leaders, clinicians and staff members can use to implement for caregiver clinical services.Editor's Note: Click here to download this free, excellent resource.
People with dementia and their care partners have an increased loneliness risk
04/10/24 at 02:00 AMCare partners have an increased loneliness risk HCP Live, by Chelsie Derman; 4/8/24 The study highlights how the experience of loneliness for care partners of people with dementia changes relationship roles throughout the dementia trajectory. A new study sought to widen the knowledge gap on why people with dementia and their care partners have an increased loneliness risk and identified primary themes: losing external social networks, losses with the dyadic relationship, and the burden of a care partner supporting their loved ones.Editor's Note:
How to talk about death
04/09/24 at 03:00 AMHow to talk about death Maine Public Radio, by Jennifer Rooks and Cindy Han; 4/5/24 Talking about death is not easy. We'll discuss why stigma and discomfort can impede end-of-life conversations, for the person who may be nearing death as well as for friends and family members. We'll find out how to address the emotional and spiritual aspects of dying. And we'll discuss the more practical legal, financial and medical matters to handle before and after someone has died.Panelists: Julie Weiss, social worker, Hospice of Southern Maine; Dr. Paul Segal, nephrologist, assistant professor of medicine; helped create curriculum for end-of-life doula students, University of New England; Dr. Fernando Moreno, palliative care specialist; medical director, Hospice of Southern Maine
Remembering my daughter while being a cancer survivor myself
04/04/24 at 03:00 AMRemembering my daughter while being a cancer survivor myself Coping, by Dottie Monroe; 4/1/24 Her name was Jill, my daughter. She was a beautiful, sensitive woman who loved animals and the joys of nature. ... Can you imagine that there is any parent in the world who wouldn’t give up their own life to save their child? Or question why my child and not me because that seems so wrong? Sometimes there is no explaining the why of things, although I gave it thought for a long time. Then one day I was done with “why.”
As America’s population ages, women shoulder the burden as primary caregivers
04/04/24 at 03:00 AMAs America’s population ages, women shoulder the burden as primary caregivers PBS News; by Ali Rogin, Claire Mufson, and Satvi Sunkara; 3/30/24 Currently, 1 in 6 Americans is older than 65, a number that’s projected to rise to 1 in 4 by 2050. As older Americans’ needs for medical care and other support grow, women bear the biggest part of the burden of caring for them. Ali Rogin speaks with some women about their experiences and author Emily Kenway about the often unseen costs of caregiving.
How to look after your mental health while packing up Mum or Dad’s home
04/03/24 at 03:00 AMHow to look after your mental health while packing up Mum or Dad’s home The Conversation, 3/31/24 So Mum or Dad has died, or moved to aged care, and now you’ve got to pack up their house. It’s a huge job and you’re dreading it. It’s normal to feel grief, loss, guilt, exhaustion or even resentment at being left with this job. So how can you look after your mental health while tackling the task?
From doctor to family: Witnessing both sides of end-of-life care
03/29/24 at 03:00 AMFrom doctor to family: Witnessing both sides of end-of-life care MedPage Today's KevinMD.com, by Jessica Bloom, MD; 3/27/24We all have those moments in medicine when we know that care has become more futile. Then we do everything in our power to educate, support, gently guide, and give permission to patients and families. There are moments that treating for a cure goes against our tenet to “first do no harm.” ... Specialists and his regular physicians sat with us, listened to my family’s questions, and offered kindness along with medical advice. They gently helped my siblings let go of futile searching for treatments. ...
Community convening aims to guide solutions to inequities in caregiving
03/28/24 at 03:00 AMCommunity convening aims to guide solutions to inequities in caregiving UMass Chan Medical School, by Susan E.W. Spencer; 3/26/24Jennifer Tjia, MD, MSCE, knows from her experience as a researcher and geriatrician how demanding the role of caregiver can be and how structural barriers impact patient outcomes. She wants to see research that drives solutions to health inequities. The second community convening of the Equity in Caregiving Project, a $3.8 million, five-year grant from the National Institutes of Health, which Dr. Tjia, professor of population & quantitative health sciences, co-leads, aims to advance the conversation about what challenges family and clinical caregivers of people with serious illness are experiencing.
The burden of getting medical care can exhaust older patients
03/28/24 at 03:00 AMThe burden of getting medical care can exhaust older patients Navigating Aging, by Judith Graham; 3/27/24 [Ishani Ganguli] is the author of a new study showing that Medicare patients spend about three weeks a year having medical tests, visiting doctors, undergoing treatments or medical procedures, seeking care in emergency rooms, or spending time in the hospital or rehabilitation facilities. ... [Additionally,] more than 1 in 10 seniors, including those recovering from or managing serious illnesses, spent a much larger portion of their lives getting care — at least 50 days a year. ... When [treatment burden becomes overwhelming], people stop following medical advice and report having a poorer quality of life, the researchers found.
Meaningful conversations to have with your loved one
03/28/24 at 03:00 AMMeaningful conversations to have with your loved oneMediaFeed.org, by Merritt Whitley; 3/27/24“One of the most important concepts in the field of grief and loss is that people drift in and out of the awareness of dying,” says Kenneth Doka, a senior consultant to the Hospice Foundation of America, and professor emeritus of gerontology at the graduate school of The College of New Rochelle. “Sometimes they do talk about it, sometimes not. The dying one should control the agenda. Don’t force conversations on them.” When your loved one feels ready to talk, the following suggestions can be comforting ways to begin a conversation: ...
ND HHS launches program for relatives providing care
03/27/24 at 03:30 AM[Pediatrics] North Dakota Health and Human Services announces new pilot program CBS KX News, by Nathaniel House; 3/26/24 North Dakota Health and Human Services (HHS) has announced that family members who provide extraordinary care to either a child or adult enrolled in an eligible North Dakota (ND) Medicaid 1915(c) waiver may receive payments from the state through the new Family Paid Caregiver pilot program. State funding for the pilot program was approved from the passage of Senate Bill 2276 during the 2023 legislative session. Eligible ND Medicaid 1915(c) waivers include the Autism Spectrum Disorder Birth Through 17 Waiver, Children with Medically Fragile Needs Home and Community-Based Services Waiver, Children’s Hospice Home and Community-Based Services Waiver and the Traditional Individual with Intellectual Disabilities and Developmental Disabilities Home and Community-Based Services Waiver.
‘You can become a husband again’
03/27/24 at 02:15 AM‘You can become a husband again’ National Association of Federal Retirees (Canada); by Jennifer Campbell; 3/25/24When his wife got a much-needed bed in palliative care, a perceptive nurse told Brian Hills he could concentrate on being a husband again, instead of a caregiver.
The process of dealing with death is experiencing rebirth in a less-religious Pittsburgh
03/26/24 at 03:00 AMThe process of dealing with death is experiencing rebirth in a less-religious Pittsburgh Digital Daily; by Med St-Esprit, PublicSource; 3/24/24 Tanisha Bowman, of the North Side, a palliative care social worker for Butler Health System and a “death walker,” walks amongst the old graves in St. Mary’s Cemetery. ... From green burial to glass orbs containing ashes, the norms of funerals and burials are broadening as religious affiliation declines. ... According to a 2021 survey by Pew Research, 3 in 10 American adults are religiously unaffiliated. Data compiled by Pew Research about the Pittsburgh metro region found that 50% of adults in the region describe religion as “very important” and nearly 20% consider themselves not religious. Shifts in faith and worship mean families as well as businesses related to death and dying have had to alter their approaches.