Literature Review
All posts tagged with “Clinical News | Caregivers - Caregiving.”
Caring for the family caregivers made ill by their work
10/14/24 at 02:00 AMCaring for the family caregivers made ill by their work Penn LDI; by Hoag Levins; 10/11/24 A randomized controlled trial (RCT) led by LDI Senior Fellow Barbara Riegel, PhD, RN, of the University of Pennsylvania School of Nursing has identified a virtual health coaching intervention that helped lessen stress for unpaid family caregivers who often neglect their own care. Published in Circulation: Heart Failure, the study focused on unpaid family caregivers providing care to adults with chronic heart failure (HF)—a condition that occurs when the heart can’t pump enough blood for the body’s minimal needs. Because the disease has a variety of symptoms and manifestations that limit palliative care and respite services, it places a heavy burden on home caregivers who are “are commonly overwhelmed and face emotional, psychosocial, and financial risks that result in a decline in their own health and wellness.”Editor's note: Family Support Through Serious Illness is an online video library of 30 brief, state-of-the-art videos for family caregivers, used upstream in the trajectory of serious illness and through palliative/hospice care. These pair with a staff video training, "Empathy for Hospice Professionals." These are designed and provided by Composing Life Out of Loss, a sponsor for this newsletter.
Ellen McGirt on supporting caregivers at work
10/09/24 at 03:00 AMEllen McGirt on supporting caregivers at work Great Place to Work; by Roula Amire with Ellen McGirt; 10/8/24 This episode of Better features journalist, speaker, and podcast host Ellen McGirt. In this deeply personal conversation, we dive into the challenges of caregiving while balancing a career. ...On how managers can better support caregivers at work: Flexible time off, no questions asked. A flexible schedule can change everything for people. ...On the impact a senior leader can have by talking about caregiving and grief: If a very senior person triggers this conversation in the workplace with a disclosure or concern, you're going to see new training, new conversations, new talking points, and new volunteers, and maybe even new staff positions around this. ...On how colleagues can support coworkers who are caretakers, or members of the sandwich generation: Kindness and compassion go a long way. ...
How to prepare yourself for death when given a terminal diagnosis
10/09/24 at 02:15 AMHow to prepare yourself for death when given a terminal diagnosis Yahoo!Life; by Kate Ng; 10/8/24 Receiving a terminal diagnosis can be a devastating blow, for the individual and their loved ones. There is no right or wrong way to react to such news, and people respond with all sorts of emotions - from anger and denial, to acceptance and peace. Having a terminal illness can also give a person new perspective. ...
There’s still joy in end-of-life care
10/07/24 at 02:00 AMThere’s still joy in end-of-life care The Seattle Medium, Seattle, WA; by Anissa Durham; 10/3/24 Caregiving is an act of love and sacrifice. But for young Black women, it’s often summed up as just being “a good daughter.” More than 100 million Americans provide care to a child, parent, or relative. And about half provide care to a spouse, elderly parent or relative, or special needs child, according to a report by Guardian. But for Black folks, the burden of doing so is often heavier. Due to disparities in education, housing, and nutrition, and less access to health insurance, — along with the “weathering” that accompanies racism-related stress — Black Americans experience higher risk and rates of chronic disease. Which means, Black folks may get sick sooner than their counterparts and make younger generations, often women, more likely to become caregivers. In a 2021 report, Black family caregivers represent 14% of the estimated 48 million unpaid family caregivers in the U.S., with Black women making up a little more than half of this group, according to the American Society on Aging. Overall, women are two times more likely than men to say they’ve left the workforce to keep up with caregiving responsibilities. And nearly 50% of caregivers are either Millennials or Gen Z, according to the Guardian report.
One Senior Place: What legal steps should be taken after dementia diagnosis?
10/02/24 at 03:00 AMOne Senior Place: What legal steps should be taken after dementia diagnosis? Florida Today; by Brenda Lyle; 10/1/24 After a dementia diagnosis, preparing key legal documents early helps families focus on the quality of life for their loved one. ... Dementia is a term for many progressive neurodegenerative disorders that affect memory, thinking, and behavior. Alzheimer accounts for about 60% of all dementias. As the disease advances, individuals may lose the ability to make informed decisions about their health care, finances and other important aspects of life. Legal planning is absolutely crucial for ensuring that the wishes of the person with dementia are honored and that their affairs are managed appropriately. This planning also helps reduce stress for family members and caregivers. [Click on the title's link to continue reading for basics about Durable power of attorney, Heath care surrogate, Living will, Last will and testament, and Guardianship.]
I asked my dad to write my wedding speech after he was given 6 months to live. I'm holding on to it for my special day.
10/01/24 at 03:00 AMI asked my dad to write my wedding speech after he was given 6 months to live. I'm holding on to it for my special day. AOL.com - Insider; by Lara Rodwell; 9/29/24 ... I remember the moment my dad told me he had six months to live like it was yesterday. ... "Lar, we need to have a chat," he said, hovering beside the edge of the bed. "I've received some news. It's not good." ... Wrapped in the comforting arms of my dad, I blurted, "Dad, you're not going to walk me down the aisle one day." ... During one sleepless night, it hit me. I wanted to create a keepsake where my dad and I could write letters, share memories and process our feelings, together. I found a tatty old notebook and wrote my first letter to him. ... The very first thing I asked him at the end of the letter, ink smudged with tears, was if he could write his wedding speech for me. ... It was a hot summer's morning, the day my dad died in the care of our local hospice. He'd been there for three weeks — in a lot of pain, stabilized by a lot of morphine — surrounded by his family. .... Later that day, ... amongst pages of financial practicalities and funeral wishes, there was a folder of white envelopes addressed to each of us - his wife and four children. On the front of mine read "Lar...". On the back: "Your wedding speech." To this day, the envelope remains sealed, tucked away at the bottom of my "dad box" — along with the notebook we shared, photo albums of memories, and a collection of swimming medals he wanted me to show his grandkids one day. ...
Grief memoir: Diapers and hospice
09/27/24 at 03:00 AMGrief memoir: Diapers and hospice We Are The Mighty; by Jessica Hall; 9/25/24 This is Chapter 8 in [Jessica Hall's] Grief Memoir. ... Following our trip to Disneyland, I was in the homestretch for my pregnancy. I was worried about what would happen when Dad went into the hospital again. What if it happened when I was in active labor? What if I was in a sleep-deprived haze with a newborn? How do I care for Dad when I’m far away and can’t travel? ... In the days before my planned induction, Dad was taken off intubation and was doing well enough. ... [Later in the story ...] I had given birth just two weeks before but I started to move quickly to go home. I started doing laundry so the baby and I could fly home to say goodbye to Dad. ...
The evolving landscape of Amyotrophic Lateral Sclerosis: A fatal disease!
09/25/24 at 03:00 AMThe evolving landscape of Amyotrophic Lateral Sclerosis: A fatal disease! Delveinsight; 9/24/24 Amyotrophic Lateral Sclerosis (ALS) is a devastating neurodegenerative disease characterized by the progressive degeneration of motor neurons, leading to muscle weakness, paralysis, and ultimately, death. ... Despite ALS being relatively rare, affecting 2-5 per 100,000 people worldwide, the question Is ALS on the rise? is gaining attention. While global prevalence has not significantly increased, improved diagnostic techniques, earlier detection, and greater awareness have led to a more accurate identification of ALS cases. Many researchers believe that enhanced surveillance and better tools for genetic testing are uncovering more cases than previously recognized, rather than a true rise in the disease’s incidence. However, with an aging global population, the burden of ALS may grow, as age is a major risk factor. Editor's note: Do you provide disease-specific training for your staff? ALS patients' and families' needs are unique. A significant disease comparison is between ALZ (Alzheimer's) and ALS. With ALZ (Alzheimer's), the brain decreases its abilities to function while the body can remain strong; the person is mobile with cognitive limitations. In contrast, with ALS, the body decreases its abilities to function while the brain/mind/emotions can remain strong. The person is immobile with cognitive awareness, but extreme physical limitations in communicating one's thoughts, emotions, and needs. ALS-specific communication tools provide crucial help for all. For more information in your location, visit The ALS Association's USA map.
Improv for Caregivers receives a grant from the New Hampshire State Council on the Arts
09/25/24 at 03:00 AMImprov for Caregivers receives a grant from the New Hampshire State Council on the Arts EINPressWire; by A. A. Cristi; 9/23/24 The New London Barn Playhouse received an arts in health grant from the New Hampshire State Council on the Arts to continue and expand their Improv for Caregivers program through a larger umbrella program titled “Improv for a Cause.” “Improv for a Cause” will encompass two communication programs that use a similar process to reach different communities. The first, Improv for Caregivers, in partnership with Lake Sunapee Region VNA & Hospice, is an ongoing communication workshop series for those who care for loved ones with dementia and Alzheimer's. ... Each improv workshop session combines insight from healthcare professionals with improvisational theatre techniques, with a goal of developing new communication skills, strategies to cope with stress, flexibility in relationships, and an understanding of loved ones' changing perspectives. With guidance from the VNA and caregivers in the community, the team of actors prepare short scenarios that portray situations caregivers commonly face, such as sundowning, taking away car keys, collaborating with care staff, and hallucinations. ...
Family caregivers need greater support from Medicare, advocates say
09/25/24 at 03:00 AMFamily caregivers need greater support from Medicare, advocates say McKnights Home Care; by Adam Healy; 9/20/24 Though federal agencies have made substantial progress on initiatives supporting family caregivers, more can be done to assist people providing unpaid care for older loved ones, according to the National Alliance for Caregiving. “While we’ve made strides, the urgent needs of family caregivers demand more ambitious action,” Jason Resendez, president and chief executive officer of NAC, said Thursday in a statement. “The time for bold action is now.” NAC specifically urged Congress to boost federal funding for national and state-level grants that support family caregivers, and recommended policies that help caregivers access paid family and medical leave, tax credits and Medicare- and Medicaid-sponsored support programs.
Wind phones help the bereaved deal with death, loss and grief − a clinical social worker explains the vital role of the old-fashioned rotary phone
09/23/24 at 03:15 AMWind phones help the bereaved deal with death, loss and grief − a clinical social worker explains the vital role of the old-fashioned rotary phone The Conversation; by Taryn Lindhorst; 9/20/24 My mother died in my home in hospice in 2020, on the day my state of Washington went into COVID-19 lockdown. Her body was taken away, but none of the usual touchstones for grief were available to our family. ... As a clinical social worker and health scholar with 40 years of experience in end-of-life care and bereavement, I knew that I needed some way to tend to my grief for my mother. While in lockdown, I began looking for resources to help me. Then I heard about the wind phone. What is a wind phone? At its simplest, a wind phone is a rotary or push-button phone located in a secluded spot in nature, usually within a booth-type structure and often next to a chair or bench. The phone line is disconnected. People use the wind phone to “call” and have a one-way conversation with deceased loved ones. Here they can say the things left unsaid. Wind phones offer a setting for the person to tell the story of their grief, to reminiscence and to continue to connect to the person who is gone. For many, it is a deeply moving, life-affirming experience. About 200 wind phones are scattered throughout the United States. Editor's note: This creative tool is similar to common clinical tools of writing a letter to the deceased person, and the "Empty Chair" technique. Caution: This should never be used as a gimmick. This can be terribly confusing and upsetting for persons with dementia, or supportive if used with professional sensitivity for the patient's awareness and experience. For persons with dementia, be familiar with the ground-breaking "Validation Therapy" techniques by Naomi Feil.
Families value flexibility and compassion in end-of-life care for children with cancer
09/23/24 at 03:00 AMFamilies value flexibility and compassion in end-of-life care for children with cancerOncology Nurse Advisor; by Megan Garlapow, PhD; 9/18/24 Bereaved families of children who died of cancer expressed a strong desire for high-quality end-of-life care that balanced comfort with continued treatment efforts, particularly chemotherapy, according to results from a study published in Cancer. Families did not perceive a conflict between comfort care and the pursuit of chemotherapy, seeking both as integral parts of their child’s final days. Despite variations in race and location, there was no clear preference for home or hospital deaths, with the median preference score being neutral at 3.0 on a 5-point Likert scale, ... Instead, decisions surrounding the location of death were often driven by the child’s preferences, medical needs, the impact on other family members, and prior experiences with death. ... Family decision-making was centered on maintaining hope, avoiding harm, and doing what was best for their child and themselves, with religious beliefs playing a significant role.
AI shouldn't decide who dies. It's neither human nor humane
09/23/24 at 03:00 AMAI shouldn't decide who dies. It's neither human nor humane Fox News; by John Paul Kolcun and Anthony Digiorgio; 9/20/24 [Opinion] As we write this, PubMed ... indexes 4,018 publications with the keyword "ChatGPT." Indeed, researchers have been using AI and large-language models (LLMs) for everything from reading pathology slides to answering patient messages. However, a recent paper in the Journal of the American Medical Association suggests that AI can act as a surrogate in end-of-life discussions. This goes too far. The authors of the paper propose creating an AI "chatbot" to speak for an otherwise incapacitated patient. To quote, "Combining individual-level behavioral data—inputs such as social media posts, church attendance, donations, travel records, and historical health care decisions—AI could learn what is important to patients and predict what they might choose in a specific circumstance." Then, the AI could express in conversant language what that patient "would have wanted," to inform end-of-life decisions. We are both neurosurgeons who routinely have these end-of-life conversations with patients’ families, as we care for those with traumatic brain injuries, strokes and brain tumors. These gut-wrenching experiences are a common, challenging and rewarding part of our job. Our experience teaches us how to connect and bond with families as we guide them through a life-changing ordeal. In some cases, we shed tears together as they navigate their emotional journey and determine what their loved one would tell us to do if they could speak.
Family members' health can suffer when relative has cancer: Study
09/19/24 at 03:00 AMFamily members' health can suffer when relative has cancer: Study Becker's Hospital Review; by Elizabeth Gregerson; 9/13/24 Individuals are at an increased risk of cardiovascular disease and psychological illness after a family member is diagnosed with cancer, according to a study published Sept. 9 in Cancer. Researchers from institutions across the U.S. analyzed data of patients diagnosed with genitourinary cancer between 1990 and 2015 who had first-degree relatives or spouses, from the Utah Population Database. The cohort of 49,284 patients and 77,938 relatives was matched with a similar control group and followed up within one-, three- and five-year periods. Among patients with genitourinary cancer, their family members had a "10% increased risk of developing a psychological illness and a 28% increased risk of developing cardiovascular disease" one year after diagnosis, according to the study. "This study provides population-level evidence to support the hypothesis that cancer diagnoses will lead to adverse health outcomes for family members of patients with cancer," the study authors wrote.
It pays to know: How to be an effective health care agent
09/16/24 at 03:00 AMIt pays to know: How to be an effective health care agent The Rafu Shimpo; by Judd Matsunaga, Esq; 9/12/24 Being asked to be someone’s health care agent is a special honor — it means the person is saying, “I trust you with my life.” That said, it’s also a huge responsibility. As a health care agent, you will be in charge of making healthcare decisions for your loved one when they can no longer make decisions for themselves. ... Advance care planning is a process. It’s not something that gets done all at once. To help you be an effective health care agent, here are some questions you can ask your loved one: (Source: www.mskcc.org, “How to Be a Health Care Agent”)
[Norway] Quality of life and relationships in caregivers of people with dementia. A gender perspective
09/14/24 at 03:05 AM[Norway] Quality of life and relationships in caregivers of people with dementia. A gender perspectiveAmerican Journal of Alzheimer's Disease and Other Dementias; Heidi Bjørge, Kari Kvaal, Ingun Ulstein; Jan-Dec 2024Home-dwelling people with dementia rely on their family members to be able to stay at home. This affects the family caregivers' quality of life (QoL). Both male and female caregivers' depression influenced their QoL. For females, their own social distress influenced their QoL, and for males, their experience of their care receivers' overemotional attitude influenced their QoL. Significant gender-specific differences were found, indicating that gender must be considered when approving caregivers' needs and planning interventions for caregivers.
Hugo man dies in house fire [hospice patient]
09/09/24 at 03:00 AMHugo man dies in house fire [hospice patient] KXII 12 TV, Hugo, OK; by KXII Staff; 9/5/24 A fire at a home in Hugo claims the life of a former Choctaw County assistant district attorney. Officials said the fire happened Sunday afternoon. The Choctaw County Emergency Manager told News 12 that John Bounds, who was in hospice care, was unable to escape. All others in the house got out safely.Editor's note: What emergency discussions do your interdisciplinary team members have with home hospice patients and their caregivers? Regular fire safety training (and other forms of patient care safety, workplace safety, etc.) are required by OSHA and accreditation organizations.
Grief redoubled by a death certificate delayed: A seven-week odyssey in search of a vital record
09/06/24 at 03:00 AMGrief redoubled by a death certificate delayed: A seven-week odyssey in search of a vital record The Provincetown Independent; by Aden Choate; 9/4/24 Richard Pask, 72, came to the select board on Aug. 27 distraught. His wife, Carol Harris, 69, who had ALS, had died at home in hospice care on July 18, he said, and the town had still not issued a death certificate. Without the certificate, Pask could not access his late wife’s pension payments, manage their mutual assets, update annuity contracts, or cancel service accounts in her name. The Social Security Administration, which has continued to issue payments to Harris — a death certificate is required to stop them — had launched an investigation into possible fraud, ...Editor's note: Root causes from this complex case study relate to the family having used a "green burial" which is becoming more common, where permitted. This case study represents a gap in collaboration between typical systems. Hospice personnel who have any 'touch-points" with the death certificate process must know and adhere to federal, state, and local policies and procedures, especially when variables occur (such as green burials).
“What I wish I knew about hospice”: A Cleveland Clinic palliative care physician’s insights
09/06/24 at 02:00 AM“What I wish I knew about hospice”: A Cleveland Clinic palliative care physician’s insights The Healthy; by Dr. Patricia Varacall, DO; 9/3/24 End-of-life care is deeply personal and incredibly complex. An expert MD shares essential insights on hospice: "At its core, is about human connection." … Laura Hoeksema, MD, MPH, FAAHPM, medical director of Cleveland Clinic Hospice and staff physician in the department of palliative and supportive care, explains the importance of hospice: “Death is a part of life just as much as birth is. When time becomes limited, patients need to be able to spend time in a way that’s meaningful to them.” ... Dr. Hoeksema emphasizes that choosing hospice care is exactly that—a choice. The team offers additional support, guiding patients and their families through the last months of life. ... “When a patient has a serious illness, it’s common for their illness to become the primary focus,” reflects Dr. Hoeksema. The constant anticipation of how the disease might progress can create overwhelming anxiety. With hospice, the illness recedes into the background, allowing the emphasis to be on caring for the person as a whole. ... “The most profound healing I’ve witnessed as a physician has been in patients receiving hospice care,” Dr. Hoeksema adds. She recalls seeing families reconcile after years of tension and others coming together after long periods of distance. The joy on a patient’s face when surrounded by loved ones, laughing and reminiscing, is what it’s all about. “Hospice care, at its core, is about human connection.”
Patients are everyday heroes
09/04/24 at 03:00 AMPatients are everyday heroes The Andalusia Star News, Andalusia, AL; by Vickie C. Waster; 9/2/24 One of my favorite songs is by Mariah Carey. The communication of the chorus speaks to what we in hospice and other areas of healthcare experience every day. This song always invokes empathy in my heart, and I believe many of you can truly resonate with the lyrics, as we share a common experience in our roles in healthcare. ... The heroes we encounter are our patients, families, and their caregivers. They show heroism in their resilience, their ability to find hope in difficult circumstances, and their unwavering support for each other. As hospice professionals, we acknowledge that we are entrusted to provide medical, spiritual, and emotional support to those in our care. We do this with a deep sense of humility and humbleness, always mindful of the respect our heroes deserve. “A hero is an ordinary individual who finds the strength to persevere and endure despite overwhelming obstacles.” Christopher Reeve
Grief Memoir: ‘It was my turn to do everything for her’
08/30/24 at 03:00 AMGrief Memoir: ‘It was my turn to do everything for her We Are The Mighty; by Jessica Hall; 8/28/24 ... I joined the phone call with the doctor where he told us all the worst news. The cancer was growing everywhere along the spine. ... He told us that it was time for hospice. ... Even though I had been preparing for this for months, I was truly not ready to go from child to caretaker. ... For my entire life, my mom had cared for me. She had been there when I was sick or hurt. She cleaned my house (sometimes to my chagrin). She cooked my favorite meals and she let me take breaks. Now it was my turn to do everything for her. It hit me like a ton of bricks, but I also just knew that I had to do it. We all had to do everything for her to make her final days easy for her. Hospice came by to get everything set up. ... [Click on the title's link to continue reading this beautiful, personal story.]Editor's Note: Calling all hospice executive leaders who do not have clinical, direct patient care experience--read this article to grasp common family dynamics, decisions, actions, emotions, and life-changing moments for each patient you serve. Multiply this out for the many family members of each patient you serve. How do your hospice services tune into and support these family members?
Avoid these mistakes in palliative care to enhance your loved one's well-being
08/27/24 at 02:00 AMAvoid these mistakes in palliative care to enhance your loved one's well-being Leesville Leader, Lake Charles, LA; by Evertise Digital; 8/26/24 For people with life-threatening diseases, palliative care is crucial in providing comfort and improving quality of life. It’s essential to focus on the details and avoid common mistakes in order to deliver good treatment. Mistakes in palliative care can inadvertently cause discomfort or diminish the quality of the support provided. It’s critical to recognize and steer clear of certain mistakes to guarantee that your loved one receives the finest treatment possible. By focusing on these key areas, you can enhance their well-being and provide the compassionate, attentive care they need during this challenging time.
“What I wish I knew about dementia”: A caregiving only child’s experience
08/23/24 at 03:00 AM“What I wish I knew about dementia”: A caregiving only child’s experience The Healthy; by Dr. Patricia Varacallo, DO; 8/20/24 It's no secret dementia affects the brain of the patient, and tests the hearts of their loved ones. Through one woman's personal journey, experts advise on the emotional, medical, and financial aspects of caregiving for dementia. ... Drawing from Ann’s caregiving journey and insights from Dr. Wint and Lucille Carriere, PhD, Cleveland Clinic Angie Ruvo Endowed Caregiving Chair, we share their collective wisdom on what they wish more people knew about dementia.
5 books to make caregiving a little more manageable
08/23/24 at 03:00 AM5 books to make caregiving a little more manageable DNYUZ; 8/19/24Tina Sadarangani, a geriatric nurse practitioner in New York City, has spent years working with older adults and their families. She counsels patients on the medications they should take, the eating habits they should change and the specialists they should see. But it wasn’t until her own father became seriously ill — requiring a slew of medications, deliveries, physical therapy and more — that she understood the experience from what she calls “the other side of the table.” ... Here are five titles, recommended by health care providers and other experts, to help those who help others.
Navigating the complexities of life and caregiving
08/19/24 at 03:00 AMNavigating the complexities of life and caregiving WorldHealth.net; by Pat Baker; 8/16/24 As individuals advance through different life stages, especially when tasked with caregiving or managing the challenges of aging, they encounter a complex web of intertwined challenges. ... This article explores the multifaceted nature of caregiving and aging, offering insights and strategies that can help individuals manage these demanding situations effectively. ... As the population ages and the demand for caregiving increases, it is crucial to continue developing strategies and policies that support caregivers and enhance the quality of care. Editor's Note: Examine 75+ caregiver education and support videos designed for hospices to use with the primary caregiver and family members you serve: Family Support through Serious Illness; Hospice Training for Caregivers and Families; Want to Understand Your Grief? Includes 10 hospice & 11 grief videos in Spanish. Designed and delivered via our newsletter's sponsor, Composing Life Out of Loss.