Literature Review

Adapting an intervention to address barriers to pain management in hospice: formative research to inform EMPOWER-D for dementia caregiversPalliative Medicine Reports; by Karla T. Washington, Morgan L. Van Vleck, Todd D. Becker, George Demiris, Debra Parker Oliver, Paul E. Tatum, Jacquelyn J. Benson, John G. Cagle; 7/24Pain management is a priority for hospice patients, including those with ADRD [Alzheimer’s disease or a related dementia], most (63%) of whom experience bothersome pain. One such intervention, EMPOWER (Effective Management of Pain: Overcoming Worries to Enable Relief), has been shown to improve hospice pain management by training hospice staff on barriers to pain management, incorporating screening for pain concerns into routine hospice care, delivering tailored pain education to hospice patients and their family caregivers, and facilitating needed follow-up services. Participants indicated that the EMPOWER-D materials addressed common pain concerns that were both family-centered and relevant to clinical dementia care. 

Resources for people coping with Alzheimer’s disease Everyday Health; by Pamela Kaufman; updated 7/29/24 No one should have to deal with Alzheimer’s alone. The government agencies, nonprofit groups, and other resources listed here can help people with Alzheimer’s and their caregivers cope with the disease through education, advocacy, support services, clinical trial opportunities, and blogs that share the wisdom of lived experience. [This essential list of resources includes:]

New medication, staging criteria signal a potential shift in Alzheimer’s care Psychiatric News; by Linda M. Richmond; 7/12/24 The latest antibody treatment for Alzheimer's disease may prompt the industry toward the use of biomarkers--rather than traditional cognitive and functional testing--for diagnosis and staging. Will the new drug make a meaningful difference in patients' lives despite its risks and hefty price tag?

Innovative program for veterans aims to combat dementia and feelings of social isolation and loneliness by distributing animatronic pets nationwide Cision PRWeb; by Capital Caring Health; 7/18/24 Capital Caring Health, part of the nation's largest not-for-profit advanced illness care and hospice provider—Chapters Health System, and Ageless Innovation, the makers of the award-winning Joy for All™ Companion Pets, are distributing companion pets to Veterans with dementia, and those suffering from feelings of social isolation and loneliness as part of their innovative "Pets for Vets" program. ... To date, Capital Caring Health's "Pets for Vets" program has distributed more than 3,000 robotic companion pets – which provide joy, companionship, emotional support, and more to Veterans, will expand to deliver 1,000+ companion pets to Veterans living in Long-Term Care Centers across the nation.

When you know you might forget everything: Living with the Alzheimer’s gene Intelligencer; by Amelia Schonbek; 7/16/24 In 2017, 23andMe began offering tests for the genetic risk of developing certain health conditions like celiac disease, Parkinson’s, and late-onset Alzheimer’s. The Alzheimer’s test will tell you if you have the gene variant APOE4, which means you have an increased likelihood of developing the disease. One in four people carry a single copy of the gene, but 2 to 3 percent of the population have two copies — one from each parent — and have a much higher probability. As with all of 23andMe’s upcharged “Health Predisposition Reports,” the sell on it was self-empowerment: Once you know, you can plan, allowing you to take charge of your well-being. 

Caregiver charged with abusing dementia patient The Freeman, Waukesha County, WI; by Freeman Staff; 7/9/24 A West Allis woman has been charged after she allegedly struck a dementia patient in her care and put a pillow over the woman’s face out of frustration. Erica Junger, 22, was charged Monday in Waukesha County Circuit Court with a count of intentionally abusing a patient, and faces up to six years in prison if convicted. She made an initial appearance in court Monday, where she was released on a $2,500 signature bond and ordered by Court Commissioner David Herring not to work in any job where she is responsible for the health care and safety of others. ... She said she "snapped" and did things she wasn’t supposed to do, but didn’t mean anything by it. ... The complaint did not identify the facility where the incident took place. But it did identify Junger as an employee of Agrace Hospice, which contracts with the facility.

A scoping review of dementia interventions in home-based primary careJournal of the American Medical Directors Association; by Jeffrey D. Weiner BA, Bruce Leff MD, Christine S. Ritchie MD, MSPH; 6/24Home-based primary care (HBPC) provides interdisciplinary, longitudinal, comprehensive care at home to homebound older adults. The prevalence of dementia among HBPC recipients is approximately 50%... Despite high prevalence of dementia among homebound older adults receiving HBPC, there are a dearth of studies on HBPC-specific dementia interventions. Future studies should consider adapting and testing interventions found to be effective in other settings to HBPC.

Green Bay Packers Foundation awards $1.75 million in grants [$125k to Agrace Hospice Care Foundation] Philanthropy News Digest; 6/29/24 The Green Bay Packers Foundation has announced 10 grants totaling $1.75 million to support organizations serving Wisconsin’s Brown, Dane, and Milwaukee counties. Recipients include ... ; Agrace Hospice Care Foundation, which will receive $125,000 to expand dementia and Alzheimer’s services throughout Wisconsin; ... “The Packers Foundation is pleased to award a record amount in impact grants to 10 organizations doing critically important work in their communities,” said Packers president and CEO Mark Murphy. “From education, mentoring, and community building programs to providing care and support for our most vulnerable neighbors, the grant recipients will create direct and lasting impacts throughout the state of Wisconsin.”

Dementia 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.]

Alzheimer’s disease and dementia care: 5 Medicare benefits consumers should know Globe Newswire, KELOLAND Media Group; by medicareresources.org; 6/19/24 With the Food and Drug Administration’s approval of new medications like Leqembi, there’s increased focus on ways Medicare can help alleviate the significant costs of Alzheimer’s and dementia care. ... “Alzheimer’s disease and other forms of dementia can come with a heavy financial burden as well as an emotional toll, which is why it’s critical patients and families understand when and how Medicare can help mitigate costs,” said Louise Norris, a health policy analyst for medicareresources.org. “People may be surprised, especially about new coverage of diagnostic tests and medications." ... Here are five critical benefits medicareresources.org says consumers might not know about:

Adapting the Serious Illness Conversation Guide for dementia careAmerican Journal of Hospice and Palliative Care; by Charlotte E Berry, Sophie H Montgomery, Robert Santulli, Amelia Cullinan; 8/24Advance care planning (ACP), a critical component of quality dementia care, is underutilized due to lack of clinician comfort and the challenging nature of ACP in this context. The Serious Illness Conversation Guide (SICG) is a well-validated clinician-facing tool, developed with patient and clinician input, to facilitate ACP. The aim of this project was to adapt the SICG for dementia for the first time to promote high-quality ACP.

Parental history of memory impairment and β-amyloid in cognitively unimpaired older adults JAMA Neurology; by Mabel Seto, PhD; Timothy J. Hohman, PhD; Elizabeth C. Mormino, PhD; Kathryn V. Papp, PhD; Rebecca E. Amariglio, PhD; Dorene M. Rentz, PsyD; Keith A. Johnson, MD; Aaron P. Schultz, PhD; Reisa A. Sperling, MD; Rachel F. Buckley, PhD; Hyun-Sik Yang, MD; 6/17/24 Objective: To characterize maternal vs paternal history of memory impairment in terms of brain Aβ-positron emission tomography (Aβ-PET) and baseline cognition among a large sample of cognitively unimpaired older adults. Conclusions and Relevance  In this study, maternal history (at any age) and paternal history of early-onset memory impairment were associated with Aβ burden among asymptomatic older individuals. Sex-specific parental history may help inform clinicians on likelihood of Aβ burden in offspring and help identify high-risk individuals at the earliest stages of disease for prevention.Editor's Note: We posted a descriptive, less data-oriented article that was about this research on 6/21/24, "Alzheimer’s history on maternal side linked to higher disease risk, study finds"

Hospice of Marion County trains first responders to care for dementia patients Hospice News; by Jim Parker; 6/18/24 Florida-based Hospice of Marion County, an affiliate of Empath Health, is training first responders in its community on how to treat dementia patients. For several years, the nonprofit hospice has been educating family caregivers and others in their community about the experiences of dementia patients and how to better interact with them. More recently, Hospice of Marion County [Ocala, Florida] has been expanding that training to include local law enforcement and fire departments, as well as medical students and staff at assisted living facilities, among others. The training uses a series of tools to simulate symptoms of dementia, related to visual, tactile, auditory senses, their ability to process information and perform certain tasks. The education helps first responders address the unique challenges associated with caring for dementia patients, according to Dr. Mery Lossada, chief medical officer of Hospice of Marion County.Editor's Note: Bravo, Hospice of Marion County!