Literature Review

Pumping irony: When the hospice is inhospitable Experience Life; by Craig Cox; 10/22/25 ... University of Michigan researchers, reviewing the health records of some 139,000 hospice patients diagnosed with dementia, found that nearly half of them were given benzodiazepines, a class of drugs designed to relieve agitation and anxiety. ... The results, in many cases, were deadly. ... “For patients who are not actively dying, patients and families may prioritize preserving cognition, communication, and function — goals that may be compromised by sedating medications,” she writes. “This further underscores the need for dementia-specific hospice interventions to help offer scalable, nonpharmacologic approaches, to equip hospice clinicians with effective alternatives.”

Traumatic brain injury in late life tied to elevated dementia risk Medscape; by Liz Scherer; 10/13/25 Traumatic brain injury (TBI) in late life is associated with a significant increase in the risk for new-onset dementia. The risk is especially elevated (by as much as 69%) within the first 5 years following the injury, according to newly published study findings. Though TBI, which results from direct impact or indirect force to the head, has long been recognized as a midlife risk factor for dementia, the risk that TBI poses in adults aged 65 years or older has been unclear.

Common hospice medications linked to higher risk of death in people with dementia EurkAlerts! American Association for the Advancement of Science (AAAS); by Michigan Medicine - University of Medicine; 10/14/25 ... [For] the growing number of Americans with dementia who enter hospice, their course is often long and unpredictable — making it especially important to ensure treatments align with each person’s goals and stage of illness. A new University of Michigan study published in JAMA Network Open finds that medications commonly prescribed to ease symptoms such as agitation, anxiety, and delirium — benzodiazepines and antipsychotics — may carry major unintended risks for people with dementia receiving hospice care. Among more than 139,000 nursing home residents with Alzheimer’s disease and related dementias enrolled in hospice between 2014 and 2018, those who began taking a benzodiazepine or an antipsychotic after enrollment were 41% and 16% more likely to die within six months, respectively, than very similar hospice patients with dementia who did not receive these medications.

The expanding role of family medicine in Alzheimer's Disease and other dementias Patient Care; by Grace Halsey; 10/7/25 [From the 2025 Family Medicine Experience conference] Family medicine's unique position in dementia management spans initial diagnosis through end-of-life care. ... Dementia Staging: Clinical Assessment and Hospice EligibilityFor practical bedside assessment and hospice determination, the Functional Assessment Staging Tool (FAST) proves particularly valuable.1 The FAST scale includes 7 main stages, progressing from no impairment (stage 1) through severe dementia requiring total care (stage 7). Stage 7 breaks down further into substages (7a-7f) that capture specific functional losses including ambulation, independent sitting, smiling, and head control. Eligibility for hospice care generally requires FAST stage 7c or beyond, indicating ... [continue reading this important criteria] Editor's Note: Leaders must understand hospice eligibility criteria when setting census goals, guiding teams, and communicating with families. Getting it wrong risks fraudulent billing, angry caregivers when live discharges occur, or too little care that comes too late. Getting it right ensures dignity, humanity, and meaningful final moments amid dementia's long goodbyes—true measures of compassionate hospice dementia care.

Milton Village Open House builds community to support caregivers of individuals with Alzheimer's, dementia, or other cognitive conditions GreatNews.Life; by Lauren Grasham; 10/6/25 To help healthcare providers better understand the numerous resources available, Milton Village hosted an open house on Tuesday, September 30. Milton Village is a collaborative effort between Milton Adult Day Services (a program of the Center for Hospice Care) and Alzheimer’s & Dementia Services of Northern Indiana (a REAL Services program) to provide comprehensive care and support to individuals living with Alzheimer’s or other cognitive conditions and their caregivers. “Inviting healthcare providers to see our facility and learn more about our programs is a great way to help them understand our unique model,” said Sarah Youngs, director of Milton Adult Day Services. “As providers tour the facility and hear how our guests engage in the programming, it’s so satisfying to see them recognize what this can mean for their patients and the patients’ caregivers.”

Emergency Department care coordination program for assisted living residents with dementia-A qualitative studyJAMA Network Open; Grace F. Wittenberg, Peter T. Serina, Nichole E. Stetten, Ann Reddy, Ellen McCreedy; 8/25Care transitions to the emergency department (ED) from assisted living centers (ALCs) for residents may include incomplete or inaccurate information during transfer. These transitions can be especially difficult for vulnerable populations, including persons living with dementia (PLWD). In this qualitative study of a care coordination intervention, CCMs [complex care managers] advocated for their patients remotely by filling information gaps, particularly for PLWD and patients in hospice, and perceived that the intervention was associated with improved patient care. CCMs also identified key areas for improvement, such as to increase ED staff awareness of the program and to expand program hours.

Communication surrounding treatment preferences for older adults with dementia during emergency medical services responseJournal of the American Geriatrics Society; by Lauren R. Pollack, Danae G. Dotolo, Anna L. Condella, Whitney A. Kiker, Jamie T. Nomitch, Elizabeth Dzeng, Nicholas J. Johnson, Thomas D. Rea, May J. Reed, Michael R. Sayre, Erin K. Kross; 9/25Emergency Medical Services (EMS) providers, capable of rapidly delivering life-prolonging interventions, are often first to respond to acute health concerns for older adults in the United States. Prior work has shown a preference among many people with dementia for comfort-focused care near end-of-life. EMS providers treating critically ill older adults with dementia face challenges that may hinder their ability to elicit treatment preferences, in particular when responding to calls from professional caregivers. Direct communication with surrogate decision-makers may facilitate goal-concordant care.Assistant Editor's note: Being an RN for over 40 years, I have seen many changes in health care, especially in what is expected now of patients/families. I remember the day when nurses were not permitted to share with the patient his/her own BP reading; instead, we were to tell patients to "ask the doctor". Back then the doctor controlled almost all aspects of the patient's care, as well as the sharing of information with the patient about his/her own medical condition. I am glad those days are gone. Now, patients are expected to engage in ongoing discussions regarding advance care planning, execute written advance directives, and are expected to share their care preferences with health providers and loved ones and/or caregivers. It would be an ideal world where health care providers were continuously aware of evolving patient preferences and could always deliver goal concordant care. I believe we need to keep working toward this goal, but I also understand that this expectation can add burden to patients who are already extremely burdened with the many difficult aspects of serious illness. I believe that, as health care providers, we need to appreciate that some people simply cannot or will not share their preferences; it is simply too scary, too foreign, too difficult to do so.

The effect of the Care Ecosystem Collaborative Care Model on end-of-life outcomes for people with dementia and their caregiversAmerican Journal of Hospice & Palliative Care; by Lauren J Hunt, Krista L Harrison, Rachel Kiekhofer, Jennifer Merrilees, Alissa B Sideman, Sarah Dulaney, I Elaine Allen, Kirby Lee, Winston Chiong, Sarah M Hooper, Stephen J Bonasera, Tamara L Braley, Bruce L Miller, Katherine L Possin; 8/25Collaborative care models that feature care navigation have been found to have a range of benefit for people with dementia (PWD) and their caregivers, but their effect on end-of-life (EOL) outcomes has not been robustly evaluated. Our primary objective was to evaluate the effect of the Care Ecosystem-a telephone-based collaborative care model for dementia with care navigation-on EOL outcomes for PWD and their caregivers. Compared to Usual Care, Care Ecosystem caregivers had higher ratings of caregiver self-efficacy prior to PWD death ... but caregiver's satisfaction with EOL care did not differ between groups ... Qualitative analysis revealed Care Ecosystem provided helpful emotional and practical support, but participants wanted more anticipatory guidance, more information about hospice care and earlier referral, and better coordination with the healthcare team.

Living with dementia: To improve lives, we need to change how we think and talk about this experience in aging societies EurekAlert! - AAAS (American Association for the Advancement of Science); peer reviewed publication by The Hastings Center; 9/24/25 To experience or even contemplate dementia raises some of the most profound questions: What does it mean to be a person? How does someone find meaning in life while facing progressive neurological deterioration? ... To improve the lives of our fellow citizens who are living with dementia or providing dementia care, all of us need to pay attention to how we imagine and talk about these interwoven and increasingly common experiences, concludes Living with Dementia: Learning from Cultural Narratives in Aging Societies, a special report published by The Hastings Center for Bioethics. This report responds to calls from health care and social service practitioners for new ways to depict and talk about dementia, a collective term for Alzheimer disease and related dementias. Editor's Note: Click here for free access to multiple articles in this crucial report, such as

“I know you didn’t want to stay”: Emergency Department conversations about disposition for people living with dementia The Gerontologist; Justine Seidenfeld, Matthew Tucker, Melissa Harris-Gersten, Gemmae M Fix, Nina R Sperber, Susan N Hastings; 8/25When people living with dementia present to the emergency department (ED), the disposition decision- to admit them to the hospital or discharge them home- can be difficult for providers. Major themes included 1) disposition conversations had significant variation in depth and content, 2) patient and care partner participation varied with disposition, and 3) satisfaction was driven by alignment of disposition preferences. Our study suggests that there are no consistent formats of disposition conversations for people living with dementia. Improving quality may be most needed when preferences are misaligned, and this should be identified early in the encounter.

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.