Literature Review
All posts tagged with “Clinical News | Caregivers - Caregiving.”
A guide to making end-of-life decisions easier for your loved ones
07/04/24 at 03:00 AMA guide to making end-of-life decisions easier for your loved ones The Detroit Jewish News; by Shari Cohen; 7/1/24 It’s not a pleasant prospect, but each of us will eventually die. For family members, the death of a loved one brings sadness and a sense of loss but also a need to deal with practical matters. ... A new guidebook, Two Envelopes: What You Want Your Loved Ones To Know When You Die, by Rusty Rosman offers practical advice to help families with the death of a relative. ... While Rosman’s book is written from a Jewish perspective, as part of her research, she spoke with funeral directors and clergy from many religious and ethnic groups. ... Rabbi Joseph Krakoff, CEO of Jewish Hospice and Chaplaincy Network (JHCN), who wrote a preface for the book, describes it as “a great motivation to help people to think about these things. I encourage everyone to talk about it when they’re healthy,” he adds.
Empowering ‘deeply undervalued’ caregivers would improve ‘lifeline for older adults’
07/03/24 at 03:00 AMEmpowering ‘deeply undervalued’ caregivers would improve ‘lifeline for older adults’ McKnights Senior Living; by Kimberly Bonvissuto; 6/28/24 Direct care workers and family caregivers remain “deeply undervalued” and often overlooked despite calls for investment in the care economy, according to the authors of a new report. “These caregivers provide a lifeline for older adults, people with disabilities, and people living with chronic conditions,” PHI and the National Alliance for Caregiving said in an issue brief released Wednesday. “Empowering them in their roles will help to ensure high quality, responsive care to meet the needs and preferences of millions of Americans now and in the future.” The organizations called on providers, Congress, the Department of Labor, the Centers for Medicare & Medicaid Services, the federal Health Resources and Services Administration, states, managed care plans and advocates to invest in the “essential partnership” between direct care workers and family caregivers. The new brief includes insights from a variety of stakeholders ... The result is a list of recommendations that prioritize improvements to direct care jobs.Editor's Note: Our sponsor, Composing Life Out of Loss, equips hospice and palliative care organizations with caregiver education and support video libraries to strengthen relationships between the direct care professional and the family caregiver, with timely information for the entire family. Contents are written to CMS CoPs, CAHPS, and contemporary grief research; English and Spanish.
Families, volunteers share stories of finding peace through hospice
07/02/24 at 03:00 AMFamilies, volunteers share stories of finding peace through hospice Salina Post; by Cristina Janney, Hays Post; 6/29/24 This is a two-part series on hospice care in northwest Kansas. Dalene Juenemann and her father, Dean, had to make the difficult decision to enter hospice care after he was diagnosed with bladder cancer. “He was just such a social guy and someone was in a couple times a week,” she said. “They were checking in on him and it was that security blanket he had.” ... He didn’t want to go through aggressive chemo and he didn’t qualify for a bladder removal because of his age. “He chose quality of life,” she said. "It was that final decision that we are done with everyone wanting a piece of me. I'm just going to enjoy life," she said. Dalene's father, Dean Shearer, was a patient of NWKareS, Hospice of Northwest Kansas, which serves 16 counties from Interstate 70 to the Nebraska border and Trego County to the Colorado border. ... She said the extra care hospice offered allowed her to just be a daughter to her father as he was dying. [Click on the title's link to continue reading stories from families and volunteers at NWKAreS.]
Supporting the Sandwich Generation: Taking care of the caregiver
06/27/24 at 03:00 AMSupporting the Sandwich Generation: Taking care of the caregiver The Examiner News, Mount Kisco, NY; by Mary K. Spengler; 6/25/24 Many Westchester residents struggle to find a balance between work and home responsibilities. Those who fall in the “sandwich generation,” typically qualified as those in their 30s or 40s, can find themselves with the unique role of bringing up their dependent children while also caring for their aging parents, all while juggling their careers. Multigenerational needs became even more pressing during the pandemic, with record numbers of adult children moving back home, younger children having to switch to virtual or hybrid learning and elderly parents needing new forms of care. Sandwich generation caregivers provide an important source of support and love to family members, and often experience feelings of satisfaction and meaning in their lives from being in this role. However, many also feel highly strained and overwhelmed due to the emotional, physical and financial burden weighing on them. Implementing positive strategies to better care for themselves while they care for others is imperative to combating caregiver burnout. ... Editor's Note: Mary K. Spengler is a registered nurse and social worker and serves as CEO of Hospice of Westchester.
Children’s Healing Center opens in Ypsilanti Township in July
06/26/24 at 03:00 AMChildren’s Healing Center opens in Ypsilanti Township in July DBusiness Magazine, Detroit, MI; by R. J. King; 6/24/24 The Children’s Healing Center will open its doors in Ypsilanti Township on July 8, offering children with weakened immune systems and their families a safe and clean place to play. ... The facility is the Children’s Healing Center’s second location after first opening its doors in Grand Rapids in 2015. The new state-of-the-art 11,000-square-foot facility features a hospital-grade environment where families can engage in a diverse range of innovative programming free of charge. “It has always been our goal to open a second location of the Children’s Healing Center,” says Amanda Barbour, founder and CEO of Children’s Healing Center. “The kids, young adults, and families who rely on us have very few options for social interaction, so we provide an invaluable outlet to build friendships and fight the effects of isolation and loneliness. The Children’s Healing Center states it is a first-of-its-kind year-round recreational facility for kids and young adults aged 0-26 with weakened immune systems and their families that provides opportunities for play, programming, education, and socialization.
Dementia decisions: Making tough choices about hospice, palliative care
06/26/24 at 03:00 AMDementia decisions: Making tough choices about hospice, palliative care Being Patient; by Katy Koop; 6/25/24 In the later stages of Alzheimer's, palliative and hospice care can be necessary. But how do you find a facility designed for dementia patients? ... Dr. Maribeth Gallagher, director of Arizona’s Hospice of the Valley dementia program, joins Being Patient video reporter Mark Niu to discuss how to make these difficult decisions and what makes a palliative or hospice care program “dementia-capable.” Gallagher’s work directing the Hospice of the Valley’s dementia program has received national and international awards for its innovative approaches. Her focus on dementia care was initially inspired by her personal experiences as a family caregiver, sharing the journey with her loved one from diagnosis to death. [Click on the title's link for the full conversation, in both audio and text.]
Unity launches Guide that enhances quality of life for dementia patients and their caregivers
06/24/24 at 03:00 AMUnity launches Guide that enhances quality of life for dementia patients and their caregivers The Chamber - Manitowoc County, De Pere, Wisconsin; Press Release; 6/20/24 In honor of The Longest Day Of The Year which is celebrated on June 20th to raise awareness and outshine the darkness of Alzheimer's disease, Unity, in partnership with National Partnership for Healthcare and Hospice Innovation (NPHI), announces the release of a new dementia care resources guide that will improve quality of life for dementia and Alzheimer’s patients, reduce hospitalizations, and ease the burden for families and caregivers. ... The new guide represents the best standards of care for mid-, advanced-, to end-stage dementia and was put together with the collective input of 100+ not-for-profit hospice, palliative care, and advanced illness care organizations. [Click on the title's link for more information, and to download the free guide.]
‘I tried to get into their shoes and their culture’. Care worker experiences in cultural end-of-life care: Interpretative phenomenological analysis
06/20/24 at 03:00 AM‘I tried to get into their shoes and their culture’. Care worker experiences in cultural end-of-life care: Interpretative phenomenological analysis Journal of Clinical Nursing / Early View; by Elizabeth Lambert RN, BN (Hons), Jo Gibson RN, BN, PhD, MAdvNsgPrac, Kasia Bail RN, BN(Hons), GCHE, PhD Aim: What are care workers' lived experiences caring for people of culturally and linguistically diverse backgrounds during end-of-life care?What does this paper contribute to the wider global community? This study highlights the importance of understanding care workers’ experiences in providing culturally appropriate end-of-life care.
The latest research indicates massage therapy has benefits from birth to end of life
06/07/24 at 03:00 AMThe latest research indicates massage therapy has benefits from birth to end of life Cision PR Newswire; by American Massage Therapy Association; 6/5/24 The American Massage Therapy Association (AMTA) is sharing recent research on how massage therapy can provide benefits from infancy through end of life. Across all ages, massage therapy can be a therapeutic approach to enhancing physical and emotional well-being. Explore the latest studies on how massage therapy can help improve the quality of life for infants, middle-aged individuals, and older adults. ... A nationwide survey of physicians, physician assistants, and nurse practitioners in palliative care documented recommendation rates of integrative therapies to target symptoms of palliative care patients. The survey found that massage therapy was the third most recommended integrative care modality behind mind-body interventions like meditation and biofeedback. The integrative therapies aimed to reduce pain, anxiety, mood disturbances, and distress.Editor's Note: While hiring a professional massage therapist might not be practical for your budget, explore contracting with massage therapist who is trained in working with medically-fragile persons to provide simple trainings for your nurses and nurse aides. Additionally, professionally trained massage therapists might be interested in volunteering their services, within appropriate parameters (i.e., not transferring the medically-fragile patient to a massage table, having a caregiver present to assist with communication, etc.).
They sacrificed to care for family and ended up on the street
06/03/24 at 03:00 AMThey sacrificed to care for family and ended up on the street Wisconsin Public Radio; by Kat McGowan; 5/29/24 ... A son or sibling or niece gives up their own apartment or full-time job to look after a relative who needs help. They share expenses, maybe living off of a benefits check. But when that family member passes away or moves to a nursing home, the social security or housing subsidy stops coming. The caregiver is in mourning, out of a job and out of a place to live. “These were folks who had left behind something to go care for mom, and then the bottom falls out,” says Margot Kushel, a homelessness researcher and professor of medicine at University of California, San Francisco. Her team documented this pattern in their intensive surveys and in-depth interviews of older homeless Californians. ... Kushel envisions one brighter possibility. Given the extreme shortage of capable home caregivers, both in California and nationwide, people who have played that role for family could be recruited to do the same job for others, helping to build this essential workforce. “If you’re caregiving for 15 months for your mom, for instance you probably have transferrable skills,” she says.Editor's Note: Pair this with recent articles we posted on 5/30/24, "The real cost of cancer: 49% of patients carry $5K+ in medical debt" and "56 percent willing to dip into retirement savings to be family caregiver: survey."
19 myths about dying people need to stop believing
05/31/24 at 03:00 AM19 myths about dying people need to stop believing Million Dollar Sense; by Anuradha Supun; 5/29/24
‘We don’t talk about death’: Winston-Salem journalist seeks to help people understand dying, deathbed visions
05/31/24 at 03:00 AM‘We don’t talk about death’: Winston-Salem journalist seeks to help people understand dying, deathbed visions Fox 8 WGHP - High Point, NC; by Bob Buckley; 5/29/24 There may not be anything that fascinates people more than death. It may be the thing many people avoid confronting the most. “In our culture, we’re pretty separated from death. And I don’t know the figures, but the vast majority … take place in hospitals. We don’t talk about death a lot in our culture,” said Phoebe Zerwick, a journalist based in Winston-Salem who recently wrote about deathbed visions for the New York Times Magazine. ... Zerwick became aware of the work of Dr. Christopher Kerr. ... “The biggest difference between hallucinations and these experiences is how the person is made to feel,” Dr. Kerr said. “Most hallucinations leave the person distressed and agitated and would be further confused. These experiences bring comfort. They bring meaning. They’re drawn from life. They really validate the life.” ... “I think the moral of the story is to be present and to be present with people when they are terminally ill. Be present when they’re dying,” Zerwick said.
56 percent willing to dip into retirement savings to be family caregiver: survey
05/30/24 at 02:15 AM56 percent willing to dip into retirement savings to be family caregiver: surveyMcKnights Senior Living; by Kathleen Steele Gaivin; 5/23/24 Fifty-six percent of Americans participating in a new survey said they would be willing to take a loan from their own retirement fund to become a caregiver for someone else. Results of the Nationwide Retirement Institute 2024 Long-Term Care Survey were released Tuesday. The research, conducted online March 12 through April 2 by The Harris Poll on behalf of Nationwide, surveyed 1,334 adults aged 28 or more years who had household incomes of at least $75,000. Dipping into retirement savings can make a serious dent into long-term finances. Forty-two percent of the respondents said they believe that being a family caregiver likely will use up the money they had planned for the future, and 43% of the total said that they are afraid that caregiving expenses will keep them from ever retiring.Editor's Note: Pair this with another article in today's newsletter, "The real cost of cancer: 49% of patients carry $5K+ in medical debt."
The real cost of cancer: 49% of patients carry $5K+ in medical debt
05/30/24 at 02:00 AMThe real cost of cancer: 49% of patients carry $5K+ in medical debt Becker's Hospital Review; by Ashleigh Hollowell; 5/28/24 ... Now, 47% of cancer patients accumulate debt as a result of their medical needs, The Wall Street Journal reported May 28. ... Some Americans are facing $38,000 or even more in medical debt, the Journal found. Additionally, more cancer patients are filing for bankruptcy, which one study linked to an 80% increased risk of dying. ... A 2024 survey of 1,284 cancer patients and survivors led by the American Cancer Society Cancer Action Network also found that: ...
Cooling down the clinic: How to de-escalate angry patients and family members
05/23/24 at 03:00 AMCooling down the clinic: How to de-escalate angry patients and family members Oncology Nurse Advisor; by Kathleen Wolf, MBA, BSN, RN, NEA-BC; 5/17/24Handling challenging interactions with patients and families can be a source of stress for oncology nurses. Patients and caregivers could be feeling angry for any number of reasons. The key is to not take their anger personally. It’s more productive to instead understand the cause of their anger. [Read more for common causes and basic de-escalation strategies.]
Have a heart – caregivers need care, too
05/22/24 at 03:00 AMHave a heart – caregivers need care, tooAmerican Heart Association; 5/14/24Living with a chronic medical condition after surviving a heart attack or stroke may come with additional health and personal care needs. Often survivors must rely on a family member or close friend to help. However, there’s a growing body of scientific research that shows people who serve as unpaid caregivers may not be getting the care they need to live longer, healthier lives, according to the American Heart Association.
Psychological trauma can worsen symptom burden at end-of-life
05/17/24 at 03:00 AMPsychological trauma can worsen symptom burden at end-of-life Hospice News; by Holly Vossel; 5/15/24 Recent research has found that traumatic experiences can lead to increased pain and symptom burden at the end of life, along with a greater likelihood of emotional suffering and isolation. Collective trauma experiences have been associated with higher instances of pain and dyspnea among more than half of seniors nationwide, a recent study found, published in the Journal of Pain and Symptom Management. Traumatized seniors are also more likely to experience loneliness, dissatisfaction with their life and depression. ... Hospices need a greater understanding of both the depth of these patients’ suffering and the scope of their unique needs to improve trauma-informed care delivery, [Dr. Ashwin] Kotwal said, assistant professor of medicine at the University of California San Francisco’s (UCSF) Division of Geriatrics.
Early palliative care perceptions by patients with cancer and primary caregivers: metaphorical language
05/16/24 at 03:00 AMEarly palliative care perceptions by patients with cancer and primary caregivers: metaphorical languageBMJ Supportive & Palliative Care; by Elena Bandieri, Sarah Bigi, Melissa Nava, Eleonora Borelli, Carlo Adolfo Porro, Erio Castellucci, Fabio Efficace, Eduardo Bruera, Oreofe Odejide, Camilla Zimmermann, Leonardo Potenza, Mario Luppi; 5/13/24Methods: Data were collected through a pen-and-paper questionnaire on respondents’ perceptions of the disease, its treatment and their idea of death, before and after receiving EPC [early palliative care]. The data were analysed by identifying all metaphorical uses of language, following the ‘metaphor identification procedure’ proposed by the Praggjelaz Group.Results: Metaphors were used from a variety of semantic fields. EPC was described using spiritual terms, to indicate that this approach was instrumental in ‘restoring life’, ‘producing hope’ and making patients feel ‘accompanied’. The most recurrent metaphors were those referring to light and salvation; spatial metaphors were used to describe the treatment and the hospital as a ‘safe haven’ and ‘an oasis of peace’.
Ridgewood author's book explores the mishaps and inspiration in caring for Mom full-time
05/13/24 at 03:00 AMRidgewood author's book explores the mishaps and inspiration in caring for Mom full-time Daily Record; by Marsha A. Stoltz; 5/10/24 How do you cope when the mother and child roles get reversed? In his book, "A Cup of Tea on the Commode," Ridgewood native Mark Porro recounts his 3½ years of caring for his 89-year-old mother, Genevieve, ... Porro was the least likely of Genevieve's six children to assume charge of her care ... "[A] sense of humor is necessary, no matter how dark," he said. Hence the book's title, a reference to serving his mother a cup of tea "to make Mom's adventures on the commode a tad more pleasant." ...
LifeBio announces partnership with New York State Office for the Aging to capture the legacies of hospice patients
05/13/24 at 02:00 AMLifeBio announces partnership with New York State Office for the Aging to capture the legacies of hospice patientsKFOL/KJUN HTV10; 5/9/24 LifeBio has launched a partnership the New York State Office for the Aging (NYSOFA) and the Association on Aging in NYS (AANYS) to rollout an innovative life story project to people in hospice care. This is the first initiative of its kind in the U.S. to be supported with funding from a state-level unit on aging. Using the LifeBio Memory app to record the voices of New Yorkers, each participating hospice patient will receive back a Life Story Book containing stories, memories and favorite photos to share with loved ones. Audio files will be saved privately and securely. LifeBio will also offer the option of journals for handwriting the stories.
Major corporate, foundation, and institutional partners join in support of caregiving, the PBS documentary and engagement project from executive producer Bradley Cooper
05/10/24 at 03:00 AMMajor corporate, foundation, and institutional partners join in support of caregiving, the PBS documentary and engagement project from executive producer Bradley CooperWETA; Press Release by Project Partners on National Engagement Initiative include Rosalynn Carter Institute for Caregivers, Milken Institue for the Future of Aging, Grantmakers In Aging, Global Coalition on Aging, and National Alliance for Caregiving; 5/8/24 WETA President and Chief Executive Officer Sharon Percy Rockefeller today announced the shared commitment from a slate of major funders and partners to support the documentary and engagement campaign for the new project Caregiving, currently in production. Bradley Cooper is an executive producer of the two-hour documentary slated to premiere on PBS in Spring 2025. Funders for this ambitious project include Otsuka America Pharmaceutical Inc.; Evelyn Y. Davis Foundation; Ralph C. Wilson; Jr. Foundation, Care.com; and the National Alliance on Mental Illness. Support for the engagement and outreach for Caregiving is made possible by The John A. Hartford Foundation.
VA extends health coverage to family caregivers of patients who served
05/09/24 at 02:00 AMVA extends health coverage to family caregivers of patients who served McKnights Home Care; by Adam Healy; 5/6/24As recognition grows nationally of the needs of unpaid caregivers, family members and caregivers of veterans soon will have more options to receive care through the Civilian Health and Medical Program of the Department of Veterans Affairs (CHAMPVA). Starting at the end of May, these caregivers will be granted new coverage for audio telehealth services, mental health care and [more]. ... Telehealth coverage is particularly important for caregiver beneficiaries living in rural areas, the VA noted.
Terminal cancer: What matters to patients and caregivers
05/08/24 at 03:00 AMTerminal cancer: What matters to patients and caregivers Medscape Medical News; by Megan Brooks; 5/6/24 What's most important to patients with terminal cancer and their caregivers? New research found that patients and caregivers both tend to prioritize symptom control over life extension but often preferring a balance. Patients and caregivers, however, are less aligned on decisions about cost containment, with patients more likely to prioritize cost containment. ... As patients approached the end of life, neither patients nor caregivers shifted their priorities from life extension to symptom management.
Chesapeake Life Center offers monthly LGBTQIA+ drop-in grief support group
05/07/24 at 02:45 AMChesapeake Life Center offers monthly LGBTQIA+ drop-in grief support group Southern Maryland News Net; 5/6/24 Chesapeake Life Center will host a monthly drop-in grief support group for members of the LGBTQIA+ community. ... Grief is a hard and vulnerable time, and it is important to have safe spaces to process what we are going through. This group is intended for adult members of the LGBTQIA+ community who are grieving a past or approaching death. The group will be facilitated by a licensed queer therapist but will be loosely structured to offer an opportunity for participants to share their feelings and grieve with community.Editor's Note: Hospice & Palliative Care Today does not post upcoming, local hospice events, grief support groups, volunteer trainings, etc. However, we're posting this LGBTQIA+ grief support due to its unique need, with opportunities for replication in other hospices.
Home care clinicians' perspectives on Advance Care Planning for patients at risk for becoming incapacitated with no evident advance directives or surrogates
05/04/24 at 02:10 AMHome care clinicians' perspectives on Advance Care Planning for patients at risk for becoming incapacitated with no evident advance directives or surrogates Journal of Hospice & Palliative Nursing; by Landau, Aviv Y. PhD, MSW; Venkatram, Chinmayi BA; Song, Jiyoun PhD, AGACNP-BC, APRN; Topaz, Maxim PhD; Klitzman, Robert MD; Shang, Jingjing PhD; Stone, Patricia PhD; McDonald, Margaret MSW; Cohen, Bevin PhD; 4/24 Abstract: ... This qualitative descriptive study elicited perspectives of home health nurses and social workers regarding barriers and facilitators to creating advance care plans in home health settings, with particular attention to patients with few familial or social contacts who can serve as surrogate decision-makers. ... Participants reported a multitude of barriers to supporting patients with advance care planning at the provider level ... Participants noted that greater socialization and connection to existing educational resources regarding the intended purpose, scope, and applicability of advance directives could benefit home care patients.