Literature Review

2024 Alzheimer's Disease Facts and Figures: Mapping a better future for dementia care navigation Alzheimer's Association, Chicago, IL; www.alz.org; 2024 2024 Alzheimer’s Disease Facts and Figures is a statistical resource for U.S. data related to Alzheimer’s disease, the most common cause of dementia. Background and context for interpretation of the data are contained in the Overview. Additional sections address prevalence, mortality and morbidity, caregiving, the dementia care workforce, and the use and costs of health care and services. The Special Report provides a comprehensive look into dementia care navigation, revealing significant insights into the experiences and challenges faced by caregivers and health care workers in helping people living with Alzheimer’s or other dementia navigate the health care system. [Click on the title's link to access and download this 149-page PDF]

The staging of 'The Story of My Life' at Asbury Memorial filled with serendipitous moments Savannah Morning News, Savannah, GA; by Amy Paige Condon; 3/6/25 ... [Ray] Ellis, a retired music and drama teacher who works now as a caregiver, and fellow church member Dottie Kluttz, a retired hospice nurse, were hanging decorations in Asbury Memorial’s Social Hall. Ellis shared how his dream of producing “The Story of My Life” was back on his mind … A former hospice nurse, Kluttz founded Savannah Hospice’s Story Keeping program in 2001 as a way for people near the end of their lives to share the story of their lives. …  [Click on the title’s link to read the serendipitous, synergistic encounters that unfolded, resulting in shows March 28, 29, 30.] [Upon underwriting for production costs,] Ellis proposed that ticket sales for the musical could serve as a fundraiser for Savannah Hospice’s Story Keeping program and the Michael J. Fox Foundation for Parkinson’s Research—a nonprofit near and dear to Ellis, who was diagnosed about three years ago with the progressive brain disease that causes tremors, stiffness and balance problems. … Stage and film actor Mark Rand, who was diagnosed with Parkinson’s around the same time as Ellis, agreed to portray Thomas to Ellis’s Alvin—even after Rand thought he would never perform again. …

Report finds those with Parkinson’s have unmet hospice needsMcKnights Long-Term Care News; by Kristen Fischer; 3/6/25 Hospice use varies depending on whether a person has Parkinson’s disease, Lewy body dementia or Alzheimer’s disease and those with Parkinson’s may have more unmet needs, a new study finds. Researchers evaluated data on 11,327,324 Medicare beneficiaries enrolled in hospice between 2010 and 2020 as part of their study, which was published Tuesday in JAMA Network Open. ... Hospice enrollees who had Parkinson’s disease and dementia with Lewy bodies were less likely to be disenrolled from hospice due to extended prognosis compared to those with Alzheimer’s disease. People who had Parkinson’s disease but not dementia with Lewy bodies were more apt to have longer stays over 180 days and turn hospice away compared to those with Alzheimer’s disease. (Short stays were defined as those less than seven days.)

Algorithm-based palliative care in patients with cancer-A cluster randomized clinical trialJAMA Network Open; Ravi B. Parikh, MD, MPP; William J. Ferrell, MPH; Yang Li, MS; Jinbo Chen, PhD; Larry Bilbrey; Nicole Johnson, BSN; Jenna White, MSW; Ramy Sedhom, MD; Natalie R. Dickson, MD; Stephen Schleicher, MD; Justin E. Bekelman, MD; Sandhya Mudumbi, MD; 2/25In this randomized clinical trial conducted in a community oncology network between November 2022 and December 2023 among 562 patients with advanced cancer identified by an automated electronic health record algorithm, default orders increased palliative care consultation (44% vs 8%) and decreased end-of-life systemic therapy (6% vs 16%) compared with usual care but did not improve patient-reported or hospice outcomes. The findings suggest that default algorithm-based palliative care orders are a scalable implementation strategy to increase palliative care referrals and reduce intensive end-of-life care. 

Rare flu complication rose in recent years Medscape; by Heidi Splete; 3/4/25 Reports of children in the United States with influenza-associated encephalopathy or encephalitis (IAE) increased from none during the 2020-2021 flu season to a preliminary 14% for the 2024-2025 season, based on a new analysis from the Centers for Disease Control and Prevention (CDC). IAE involves a range of neurologic syndromes triggered by flu infection of the respiratory tract, with diagnosis based on brain lesions detectable on imaging, wrote Amara Fazal, MD, and colleagues at the CDC’s National Center for Immunization and Respiratory Diseases. A series of anecdotal reports of pediatric cases with IAE in January 2025 prompted the CDC’s investigation; the findings were published in the Morbidity and Mortality Weekly Report (MMWR).

Patient put in hospice at 52 celebrates life years after admission, thanks to heart surgery KCTV-5, Kansas City, MO; by Morgan Riddell; 2/27/25 A local man with heart failure who was told numerous times he only had months to live now has a new outlook on life two years later. ... It started in 2023. Sam Edwards, who was diagnosed with ALS after serving in the military, started experiencing new pains. He went to doctors who all determined Sam was just experiencing issues related to ALS. Then, a doctor at the VA Hospital noticed some tests were off and found Sam was experiencing heart failure. What he needed was open heart surgery, but doctors determined the risk of putting Sam on the operation table was too high. Not only was he at risk of having a stroke and dying on the operating table, but his recovery would also be months long and painful. They declined to do the surgery at the VA and suggested Sam go get a second opinion. This is when he was connected with Dr. Michael Gibson.Editor's note: While we in the palliative and hospice field promote earlier admissions to care and elimination of overtreatment, another side of the coin exists. Click on the title's link to read more about this hospice patient who sought out a second opinion. Imagine: the hospice patient is you (at age 52); or a family member; or a best friend. Especially as AI becomes more prevalent in assessing palliative and hospice referrals, we must see the bigger picture and retain human element. 

Associations between end-stage ALS care and specialty palliative care: A hypothesis-generating studyMuscle and Nerve; Christi M Lero, Annabelle Yang, Elyse Everett, Kyle A Pitzer, Kelly McCoy Gross, Karla T Washington; 2/25Amyotrophic lateral sclerosis (ALS) care is typically delivered via a multidisciplinary approach that may include specialty palliative care (SPC). Patients who received SPC (59%), had lower mean forced vital capacity ... , and more often used respiratory support ... , participated in goals of care conversations ... , reported a healthcare proxy ... , and enrolled in hospice ... than patients who received standard care alone. No differences between groups were found in duration of illness (mean = 51.7 months), use of assistive feeding, Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) scores, ... documentation of a healthcare proxy, length of hospice stay (mean = 47.3 days), or location of death.

Leading early conversations about ICD [implantable cardioverter defibrillator] use in end-of-life cancer care  Cancer Network; by Megan Mullins, PhD, MPH; 2/21/25 Earlier and more frequent talks about disabling ICDs with patients receiving end-of-life care and their families may help avoid excessive pain. ... Regarding implantable cardioverter defibrillators (ICDs) in those with fatal cancers, it is critical that patients know what having a device means and how it impacts end-of-life care, according to Megan Mullins, PhD, MPH. CancerNetwork® spoke with Mullins, assistant professor in the Peter O’Donnell Jr. School of Public Health, the Harold C. Simmons Comprehensive Cancer Center, and the Department of Internal Medicine at UT Southwestern Medical Center, about how ICD deactivation prior to end-of-life care could impact clinical practice in patients with advanced cancers. ... She emphasized that device deactivation would allow the body to undergo the natural dying process without unnecessary painful shocks associated with the use of the device.

Study shows end-of-life cancer care lacking for Medicare patients Vanderbilt University Medical Center (VUMC) News; by Tom Wilemon; 2/21/25 The study involved patients of diverse ethnic backgrounds age 66 or older who died from breast, prostate, pancreatic or lung cancers. Many Medicare patients with advanced cancer receive potentially aggressive treatment at the expense of supportive care, according to a study that analyzed Medicare records. The study, published Feb. 21 in JAMA Health Forum, examined the quality of end-of-life care among 33,744 Medicare decedents. ... Overall, claims records showed that 45% of the patients experienced potentially aggressive care (such as multiple acute care visits within days of death), while there was a low receipt of supportive care, such as palliative, hospice and advanced care planning in the last six months of life. While hospice care spiked to more than 70% during the month that death occurred, over 16% of patients spent less than 3 days in hospices. Moreover, receipt of advanced care planning and palliative care remained below 25%. Editor's note: Click here for the research article, "Contemporary Patterns of End-of-Life Care Among Medicare Beneficiaries With Advanced Cancer." Though this research was published just this past Friday February 21, 2025, multiple newsletters are posting it, highlighting different elements. 

Hospice workers in Tampa experience what it feels like to live with dementiaFox 13 Tampa Bay, FL; by Kailey Tracy; 2/19/25 Keosha Simmons says her father, who died in 2018, was a hard worker and an amazing man. ... "He did live with dementia. It was an early onset of dementia. He ended up with cancer, and it was a later stage when we found out about it, and that's when he came under the care of Empath Health Suncoast Hospice," Simmons said. Simmons is now the Director of Empath’s Community Engagement team. On Wednesday, Simmons and her team did a different kind of training. It was a hands-on simulation to experience what someone with dementia feels. [From this article's "The Brief" Summary.]

New ACS research finds low uptake of supportive care at the end-of-life for patients with advanced cancer EurekAlert! - American Association for the Advancement of Science (AAAS); Peer-Reviewed Publication by American Cancer Society; 2/21/25  Despite considerable efforts to improve the quality of end-of-life care in the United States, a new retrospective study led by American Cancer Society (ACS) researchers revealed that close to half of patients with advanced cancer received potentially aggressive care at the end-of-life at the expense of supportive care. The findings are out today in the Journal of the American Medical Association (JAMA) Health Forum. ... Study results showed only one-quarter of patients diagnosed with advanced cancer received any palliative care in the last 6 months of life, and those who received it did so mainly in the month of death. Overall, 45% of decedents experienced any indicator of potentially aggressive care. There was an increase in the mean number of acute care visits (from 14.0 to 46.2 per 100 person-months), hospice use (from 6.6 to 73.9 per 100 person-months), palliative care (from 2.6 to 26.1 per 100 person-months), and advanced care planning (from 1.7 to 12.8 per 100 person-months) over the last 6 months of life. ...

Measures to prevent and control COVID-19 in skilled nursing facilities-A scoping reviewJAMA Health Forum; Benjamin E. Canter, OTD; Agne Ulyte, MD; Brian E. McGarry, PhD; Michael L. Barnett, MD, MS; 1/25Skilled nursing facilities (SNFs) experienced high mortality during the COVID-19 pandemic, leading them to adopt preventive measures to counteract viral spread. This scoping review identified 16 preventive measures, both nonpharmacologic (eg, staffing, visitor restrictions) and pharmacologic (eg, vaccines, antivirals) interventions. Nonpharmacologic measures were widely implemented but lacked evidence for effectiveness, whereas vaccinations and antivirals showed substantial benefits but were underutilized; up-to-date vaccination status was suboptimal in residents and staff and only a minority of infected residents received antiviral treatment.