Literature Review

Patient-and caregiver-identified goals for advance care planning in patients with dementia or cognitive impairmentDementia; by Kristin L Rising, Angela M Gerolamo, Nazanin Sarpoulaki, Venise J Salcedo, Grace Amadio, Robin Casten, Anna Marie Chang, Alexzandra T Gentsch, C Virginia O'Hayer, Barry Rovner, Brooke Worster; 8/25Despite an aging population and acknowledged importance of advance care planning (ACP) for persons living with cognitive impairment, few engage in ACP. Most existing tools to facilitate ACP discussions focus on medical outcomes, despite research documenting that persons with cognitive impairment often have quality of life outcomes as primary goals. This qualitative study engaged persons with mild cognitive impairment (MCI) or dementia and their carers to identify outcomes that are most important to inform development of a tool to guide ACP interventions with this population. Participants identified 23 outcome categories for ACP interventions within the following six domains: social life, family involvement, current lifestyle, physical independence, financial independence and healthcare goals. Of the 23 outcome categories, the majority (86%) were quality of life goals and only a small fraction (14%) were healthcare specific.

Perspectives of hospice medical directors on challenges and solutions for improving care for persons living with dementias (PLWD) and their caregiversAmerican Journal of Hospice and Palliative Care; by Taeyoung Park, Abhay Tiwari, Elizabeth Luth, Yongkang Zhang, Simone Prather, Micah Toliver, Giancarlo Chuquitarco, Veerawat Phongtankuel; 8/25A larger proportion of PLWD [persons living with dementia] outlive the 6-month hospice eligibility requirement compared to other terminally ill patients, which leads to high rates of hospice live discharge. Hospice medical directors (HMDs) are physicians with unique insights into both the clinical aspects of care and the administrative and regulatory guidelines of hospice care delivery. To address these challenges, HMDs suggested (1) establishing a dementia-specific hospice program, (2) extending hospice benefit availability for PLWD, and (3) creating a step-down service for families experiencing live discharge from hospice. HMD participants suggested providing additional supports and/or reforming the current Medicare hospice benefits to better address end-of-life care for PLWD, who may require prolonged and intensive end-of-life support.

Raising the standard of Arizona’s dementia care Lovin' Life; by Lin Sue Flood; 9/7/25 Arizona is setting a bold new standard to better support families impacted by dementia. A groundbreaking state mandate requires all memory care facilities to provide up to 12 hours of specialized dementia training to their staff, plus four hours of continuing education each year. This extensive training combines online video modules with hands-on, in-person skills sessions. Hospice of the Valley’s experienced Dementia Team is leading the way as one of the agencies the Arizona Department of Health Services has approved to deliver this comprehensive training. The nonprofit organization is unique in offering it as a free community service.

How to move a parent with dementia against family resistance—and stay legal Advisorpedia; by Carolyn Rosenblatt; 9/3/25 The phone call came to Dad’s daughter (FD) at 6 AM. Again. This time, it was the night caregiver reporting that her father had fallen while trying to get out of bed. She had jumped up and tried to stop him but she could only get to him in time to break his fall. ... The caregiver was exasperated. She needed more help and SW did not provide it. It was the third incident in two weeks, and FD knew something had to change.

Do dementia care management programs work? A podcast with David Reuben and Greg SachsGeriPal podcast; by Eric Widera, Alex Smith, David Reuben, Greg Sachs; 8/28/25With all the attention focused on Alzheimer’s biomarkers and amyloid antibodies, it’s easy to forget that comprehensive dementia care is more than blood draws and infusions. On today’s podcast, we buck this trend and dive into the complexities and challenges of comprehensive dementia care with the authors of two pivotal articles recently published in JAMA.

The Faith Care Family Project: A pilot intervention for African American dementia family caregiversAmerican Journal of Alzheimer's Disease and Other Dementias; Noelle L Fields, Ling Xu, Ishan C Williams, Fayron Epps, Samantha Tinker; 8/25The Faith Care Family (FCF) Project was a telephone based, volunteer-led intervention for African American Alzheimer’s disease and related dementias (AD/ADRD) family caregivers that was piloted in one predominantly African American church. Church volunteers indicated overall significant improvements knowledge of AD/ADRD after the training as well as after the intervention. Quantitative results indicated that caregivers increased their knowledge of dementia, reported improved coping skills, and reported increased positive aspects of caregiving. Feeling a connection, normalizing the challenges of caregiving, gaining or reinforcing knowledge, and sharing community resources were themes from qualitative interviews with the family caregivers.

"It may cost you your money, it costs you your life": A framework for financial hardship in dementiaGerontologist; by Krista L Harrison, Emily R Adrion, Juliana Friend, Sarah B Garrett, Madina Halim, Michael Terranova, Alissa B Sideman, Nicole D Boyd, Georges Naasan, Joni Gilissen, Pei Chen, Melissa D Aldridge, Daniel Dohan, Michael D Geschwind, Alexander K Smith, Christine S Ritchie; 7/25Care for persons with dementia costs ∼ $500 billion annually in the United States. Few qualitative studies or conceptual frameworks of the financial experiences of people impacted by dementia exist. This study examined how patients and caregivers impacted by different types of dementia and at different points in the disease journey described financial issues within a palliative care context... Even in a well-resourced population, the financial toll of dementia can be substantial. The Direct-Emotional-Logistical framework of dementia financial hardship can be used to assess financial impacts in palliative care settings.

Asking older adults with impaired cognition and care partners about serious illness experiences can elicit goals of care during advance care planning Americn Journal of Hospice and Palliative Medicine; by Glory H. Thai, BS, Valecia Hanna, MS, Peiyuan Zhang, MSW, Chase Mulholland Green, MPH, John Cagle, PhD, MSW, Jennifer L. Wolff, PhD, and Martha Abshire Saylor, PhD, RN; 8/13/25 Older adults with cognitive impairment and their care partners were able to respond to serious illness experience questions, with responses eliciting a spectrum of goals of care. Integrating such questions into advanced care planning (ACP) for older adults with cognitive impairment may clarify goals of care and improve decision-making for patients and families. 

Issues in developing multilingual graphics-based digital caregiver guides for dementia careDiscourse, Context & Media; by Boyd H. Davis, Margaret Maclagan, Meredith Troutman-Jordan; 8/25To increase the opportunity to educate caregivers for persons with dementia, particularly the nearly 40% of migrant healthcare workers emigrating to the US, we have chosen an adaptation of graphic medicine as a means of presenting these workers with conversations about dementia care in two formats of ‘mini-comics’: photo-based and cartoon. Our graphic Caregiver Guides are a form of mediated digital discourse that incorporate both words and pictures, and thereby support caregivers as they draw immediately useful guidance from online materials when offering daily off-line care. Each guide covers a situation that occurs commonly as caregivers care for people living with dementia.

Hospice of Marion County holds monthly Memory Cafes Marion Citizen; by Diane Renyhart; 7/30/25 ...  It is estimated that 15,000 Marion County residents are struggling with some form of dementia. There are over 600 Memory Cafes around the country, and we are fortunate to have one here in Ocala as part of the Dementia Education Program at Hospice of Marion County. The Memory Cafes are held the second Friday of each month at the Empath Health Hospice Elliot Center and feature special themes. The meeting room is decorated and the tables have centerpieces that often include balloons. ... Every meeting features special activities each month. The local Memory Café has partnered with Arts and Health Ocala Metro.

Association releases first-ever guideline on use of blood tests to diagnose Alzheimer’s disease McKnights Long-Term Care News; by Donna Shryer; 7/29/25 The Alzheimer’s Association has issued its first clinical practice guideline on the use of blood tests to help diagnose Alzheimer’s disease in people with cognitive impairment. Released at the 2025 Alzheimer’s Association International Conference this week, the guideline establishes performance thresholds that blood-based biomarker tests must meet before they can be used in specialized memory care settings. ... “This is a pivotal moment in Alzheimer’s care,” said Maria C. Carrillo, PhD, the Association’s chief science officer and a guideline co-author. “For the first time, we have a rigorously evidence-based guideline that empowers clinicians to use blood biomarker tests confidently and consistently.”

Systemic strategies to prevent nonbeneficial treatments near the end of lifeJAMA Network Open; by Sofia Weiss Goitiandia, Amy Z. Sun, Amy Rosenwohl-Mack, Catthi Ly, Katherine E. Sleeman, Daniel Dohan, Elizabeth Dzeng; 7/25There exists a default toward high-intensity treatments near the end of life in the United States, including for people living with advanced dementia (PLWD). Clinical momentum, a cascade of increasingly intensive treatments facilitated by systemic factors, contributes to this default. The intensity of treatments provided to PLWD near the end of life is lower in Great Britain. Using Great Britain as a counterexample to the United States, this study examines factors that may contribute to lower-intensity treatment patterns.

End-of-life symptoms in persons dying with advanced dementia in the community setting: Findings from IN-PEACEJournal of Pain and Symptom Management; by Kurt Kroenke, Sujuan Gao, Susan E. Hickman, Alexia M. Torke, Nina M. Johnson, Amy Pemberton, Andrea Vrobel, Minmin Pan, Laura R. Holtz, Greg A. Sachs; 8/25This article characterizes symptom burden in persons with advanced dementia dying in the community who were enrolled in a 2-year trial of home-based palliative care. Symptoms did not generally worsen from enrollment to time of death and symptom severity was similar to persons with dementia dying in a nursing home.