Literature Review

Study raises questions about GUIDE model’s helpfulness for caregivers of loved ones with dementia McKnights Home Care; by Adam Healy; 4/1/25 The Guiding an Improve Dementia Experience may need to be fine-tuned to better serve caregivers of those living with dementia, according to a new study published in Alzheimer’s & Dementia. The researchers identified 565 older adults and 555 caregivers eligible for GUIDE using data from the 2022 National Health and Aging Trends Study and National Study of Caregiving. They found that approximately half of GUIDE-eligible people with dementia received care from two or more caregivers, and about a third of these caregivers reported experiencing high caregiving strain. [Continue reading ...] 

Paint and sip event held to honor watercolorist Paul St. Denis The Gazette, Medina, OH; by Sara Crawford; 3/292/25 Easels, paint palettes and paintbrushes lined the activity room tables at the Echelon of Medina on Thursday as family, friends and staff members gathered to celebrate the accomplishments of watercolorist Paul St. Denis. St. Denis received a Bachelor of Fine Arts from the Cleveland Institute of Art and a Master of Arts from Kent State University. He then taught at the Cleveland Institute of Art for 27 years while also teaching at other schools. Now, St. Denis lives in the Spencer House Memory Care Neighborhood at the Echelon of Medina, where he also is cared for by Turas Hospice. Jessica Hine, Echelon’s activity director and Turas’ volunteer coordinator, said Turas Hospice held Thursday’s event with its sole focus on St. Denis and his watercoloring career. “Turas Hospice wants to stand out as a hospice company and do more special things for the hospice patients,” Hine said.  [Continue reading ...]

Weinstein Hospice launches innovative VR initiative: The program will allow residents to enjoy "bucket list" experiences Atlanta Jewish Times; by AJT Staff; 3/12/25 Jewish HomeLife and Weinstein Hospice are pioneering a new way to bring joy, comfort, and meaningful experiences to hospice patients through the groundbreaking Weinstein Hospice VR Initiative. This transformative program harnesses the power of virtual reality (VR) to fulfill unforgettable “bucket list” experiences, offering patients moments of joy and cognitive stimulation that transcend their physical limitations. For Vicki and Ed A., this initiative has been nothing short of miraculous. ... One of the most profound moments for Ed came when he was able to experience Scuba diving again—virtually. ...

[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]

J-Sei Home closes after 30 years, leaving Bay Area Japanese seniors in need KQED, San Francisco, CA; by Cecilia Lei; 3/10/25 ... For decades, Bay Area Japanese American families have sought culturally sensitive senior care facilities like J-Sei Home for aging loved ones. Community members said that about a decade ago, there were approximately 10 Japanese senior care homes in the region. Today, that number has declined by about half. The most recent closure came in January, when the last residents of J-Sei Home moved out, and the facility permanently closed its doors after 30 years of operation. A majority of the displaced residents were Japanese Americans in their 90s and had cognitive impairment. ... They had tender caregivers who spoke Japanese. They ate familiar comfort foods like miso soup and pickled vegetables, and they participated in daily activities such as drum circles and singing Japanese songs. ...

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.