Literature Review

[Canada] Use of feeding tubes among hospitalized older adults with dementiaJAMA Network Open; Anne-Marie Hartford, MSc; Wenshan Li, PhD; Danial Qureshi, MSc; Robert Talarico, MSc; Stephen G. Fung, MPH; Shirley H. Bush, MBBS; Genevieve Casey, MSc, MBBS; Sarina R. Isenberg, MA, PhD; Colleen Webber, PhD; Peter Tanuseputro, MHSc, MD; 2/25In this cohort study of hospitalized individuals with dementia, feeding tube insertion was not associated with improved survival or postdischarge outcomes. Being male or younger and having swallowing problems and greater functional impairments were associated with increased odds of feeding tube use, while having a do-not-resuscitate directive and living in rural settings were associated with reduced odds. Factors that were (or were not) associated with feeding tube placement were sometimes misaligned with best practice guidelines. Goals of care conversations, alternative intervention options, and improved clinical protocols are recommended. 

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]

Assessing pain, anxiety and other symptoms of nursing home residents unable to speak for themselves Regenstrief Institute, Indianapolis, IN; by Kathleen T. Unroe, MD, MHA; 3/10/25 Revamped tool reliably addresses physical and emotional distress, well-being and end-of-life symptoms. As many as half of nursing home residents are cognitively impaired and may be unable to communicate symptoms such as pain or anxiety to the staff and clinicians caring for them. Therefore, information needed for the evaluation of symptoms and subsequent treatment decisions typically does not reliably exist in nursing home electronic health records (EHRs). A new paper reports on the novel adaptation of a commonly used symptom assessment instrument to more comprehensively acquire this difficult-to-obtain data with the ultimate goal of enabling knowledge-based expansion of palliative care services in nursing homes to address residents’ symptoms. 

Breaking bad news: Guidance on disclosing a dementia diagnosis Medscape; by Megan Brooks; 3/3/25 As biomarker testing for Alzheimer’s disease (AD) evolves, timely and compassionate disclosure of a diagnosis is more complex than ever. Yet, clinicians may struggle with how — or in some cases whether — to disclose that a patient has mild cognitive impairment (MCI) or dementia. A recent perspective offers a practical roadmap to help clinicians navigate these challenging conversations. The authors from the Perelman School of Medicine, University of Pennsylvania, Philadelphia, noted that disclosure of a dementia diagnosis “is particularly nuanced and requires a conscientious approach. Clinicians must assess patients’ understanding and appreciation of symptoms, goals for the evaluation, and desire for information.” 

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.]

How to help caregivers of patients with dementia Physician's Weekly; by Linda Girgis, MD, FAAP; 2/13/25 Dr. Linda Girgis discusses how physicians can assist caregivers of patients with dementia, helping these critical caretakers avoid experiencing burnout. ... As doctors, we all have witnessed caregiver burnout. Often, it was a family member who bore the brunt of the responsibility, one for whom there were no vacation days or sick time available. Whatever specialty we practice, we know patients with dementia can present a significant problem. ... How can we assist caregivers of patients with dementia?

Palliative care slashes ED visits, hospitalizations in people living at home with dementia: study McKnights Long-Term Care News; by Kristen Fischer; 1/30/25 A program that provides palliative care to people with dementia and their caregivers lowered the number of emergency department visits and hospitalizations by approximately half in about a year, a new study shows. Those who benefitted the most from the Indiana Palliative Excellence in Alzheimer Care Efforts (IN-PEACE) initiative were Black people and those with lower incomes. A report detailing the findings was published in JAMA ... The 50% decrease in emergency department visits and hospitalizations among people who received the intervention shows that the program can keep some people with dementia out of the hospital, where they can develop complications and functional declines.

Illness, and poetry, can transform usJAMA; Rafael Campo, MD, MA; 1/25... just as illness may alter our bodies and minds in unknowable ways, so can poetry subject us to the unexpected—through metaphor, imagery, and form—and thus can be indispensable as a guide to those in medicine seeking to provide empathetic care. Poetry becomes transformational, the shape-shifting text itself embodying the seemingly incomprehensible, making the father’s dementia and the speaker’s sense of grief, anger, and loss ultimately palpably human. Though perhaps readers can’t fully grasp the experience of Alzheimer disease, or losing one’s parent to its ravages, through poetry we can feel restored and heartened by its transformative power, “saying yes yes/we could live anywhere.”

For 27 years, I had minimal contact with my abusive mother. Then she moved in with me. HuffPost; by Carole Brodsky; 1/20/25 ... Living with my mom was the last thing I ever thought I’d be doing as an adult. Perhaps I accepted her back into my life because there were no other options available. Perhaps it was because I was the daughter of someone who in today’s vernacular would be called a “tiger mom,” and I’d been taught caring for an aging parent was what “good daughters” did.  ... As a child, my mother was abusive.  ... [Now, as] Mom’s verbal skills declined, we had to use our eyes, guts and hearts to discern the needs of a person whose tether to this world was fraying before our eyes. ... My partner has a saying: I always forgive, but I never forget. I have unequivocally forgiven my mother for everything. I have tried, with varying degrees of success, to let the vestiges of her abuse die with her and not invade the lives of my children, grandchildren and now, great-grandchildren. The work on forgiving myself will continue for the rest of my life.

Advance care planning among diverse U.S. older adults with varied cognition levelsAlzheimer's & Dementia; by Zahra Rahemi, Swann Arp Adams; 1/25Older adults from minority groups often experience elevated rates of chronic diseases and cognitive impairment, coupled with lower rates of engagement in advance care planning (ACP) and comfort care as they approach end of life... Our study revealed that individuals facing cognitive impairments exhibited lower rates of engagement in ACP. Notably, among the variables examined, race, ethnicity, rural residence, education, and age emerged as significant predictors of ACP in a national sample of older adults in the U.S. These findings underscore the importance of incorporating these sociodemographic factors into the design of interventional studies aimed at enhancing ACP and mitigating disparities.

“I aim to fulfill my promise”: Dementia caregiving from the perspective of spouses and partnersJournal of Applied Gerontology; Haley M. Shiff, Theresa A. Allison, Madina Halim, Kenneth E. Covinsky, Alexander K. Smith, Deborah E. Barnes, Jennie M. Gubner, Kara Zamora; 1/25In the United States, spouses provide 17% of in-home care for people living with dementia. We found common features underlying the care provided by spouses/partners, including challenges and motivators guided by notions of loyalty and commitment. As cognition and function declined, care partners found the relationship increasingly difficult. They shared the feeling of being stuck as well as the loss of identity and freedom. This finding follows what Westrelin et al. (2024) describe in their study on spousal caregivers of partners living with dementia, in which spouses perceived changes not only in their partner but also in themselves and oscillated between their identity as a caregiver and as a spouse, highlighting the dynamic nature of caregiver identity construction within the context of caring for a partner living with dementia.

United States dementia cases estimated to double by 2060: Anticipated jump especially large for women, Black people & those over age 75NYULangone Health; by David March; 1/13/25A new study shows that the risk of developing dementia at any time after age 55 among Americans is 42 percent, more than double the risk reported by older studies. That dementia risk translates into an estimated half-million cases this year, rising to a million new cases a year by 2060, according to the new work. Dementia involves progressive declines in memory, concentration, and judgment. The increasing number of cases is directly tied to the aging of the U.S. population. Beyond aging, a high risk of dementia is linked to genetic factors, as well as high rates of hypertension and diabetes, obesity, unhealthy diets, lack of exercise, and poor mental health.

Behavioral symptoms and treatment challenges for patients living with dementia: Hospice clinician and caregiver perspectivesJournal of the American Geriatrics Society; Karolina Sadowska BA; Molly Turnwald BA; Thomas O'Neil MD; Donovan T. Maust MD, MS; Lauren B. Gerlach DO, MS; 12/24Dementia affects one in three older adults over age 85 and individuals with dementia constitute the fastest growing population of patients entering hospice care. While cognitive impairment is the hallmark of dementia, behavioral symptoms are reported in nearly all patients with advanced dementia, contributing to both the complexity of end-of-life care and caregiver burden. Behavioral symptoms of dementia are highly prevalent among the US hospice population and are often managed with psychotropic medications prescribed off-label. There are limited treatment guidelines in this population, so the appropriate risk and benefit balance may be highly individual. This qualitative study can help to inform the decision-making of hospice clinicians and caregivers regarding anticipated behavioral changes and limitations of treatment options in dementia end-of-life care.