Literature Review

When families fight over a relative with dementia, it’s time to call in the mediator The New York Times; by Paula Span; 5/13/24 Trained negotiators can help families struggling with vexing elder-care issues.  The four adult children were in agreement. Their father, William Curry, a retired electrical engineer and business executive, was sinking deeper into dementia. ... [But their mother] remained determined to continue caring for her 81-year-old husband at home, despite the increasing toll on her own health. ... As the weeks passed, “we were really at an impasse,” [a daughter] said. “Do you override your mother?” ...  [Increasingly,] families seek elder mediation privately, before disputes land in court and imperil or destroy family relationships. [Continue reading for descriptions of how mediation differs from arbitration, from family therapy, and for cautions about this being "a fairly new field with no nationwide certification or licensing requirements."]Editor's Notes: Executive leaders, what community education and resources are you providing for Advance Directives? What family systems education and and problem-solving are you providing for your interdisciplinary team members and grief counselors? Family conflicts are inherent--in some form or fashion--with almost anyone needing dementia care, especially when paired with palliative or hospice care. (If in doubt, ask your seasoned, front-line professionals.)

Nurse Practitioner care, scope of practice, and end-of-life outcomes for nursing home residents with dementia JAMA Health Forum - JAMA Network; by Cyrus M. Kosar, PhD; Bishnu B. Thapa, MPA, PhD; Ulrike Muench, RN, PhD; Christopher Santostefano, RN, MPH; Emily A. Gadbois, PhD; Hyesung Oh, MA, MBA; Pedro L. Gozalo, PhD; Momotazur Rahman, PhD; Elizabeth M. White, APRN, PhD; 5/10/24 Question: Is nurse practitioner (NP) care associated with end-of-life outcomes for nursing home residents with Alzheimer disease and related dementias (ADRD), and do these associations differ between states with full vs restrictive NP scope of practice regulations? Findings: The results of this cohort study including 334 618 US nursing home residents with ADRD indicated that decedents with greater NP involvement at end of life had fewer hospitalizations and higher hospice use. The adjusted differences in outcomes between decedents with extensive vs minimal NP care were larger in states with full scope of practice regulations than in states with restrictive regulations.

Care for Alzheimer's on Medicaid is unorganized, frustrating, inhumanThe Indianapolis Star, by Darcy Metcalfe; 4/14/24What it is like to die of Alzheimer’s in America? Without a doubt, it is nothing as it is portrayed on NBC’s hit series This is Us. At the end of this series, the character Rebecca dies from Alzheimer’s and falls peacefully asleep, snuggly tucked in her warm bed at home, surrounded by family and 24-hour skilled nursing care. Throughout the six seasons of This is Us, I simultaneously witnessed my father’s slow dying from Alzheimer’s in a reality that was worlds away from Rebecca’s. ...

Mortality, hospice use rates differ in assisted living communities depending on whether memory care is offeredMcKnights Senior Living, by Kimberly Bonvissuto; 4/4/24Assisted living communities that provide memory care services may attract residents closer to the end of life or promote hospice use at the end of life compared with assisted living communities without such services, according to the findings of a new study. ... Researchers from the Brown University School of Public Health, the University of Melbourne and the Johns Hopkins University School of Nursing examined whether end-of-life outcomes — mortality and hospice use — differed between assisted living facilities with and without memory care services among 15,152 residents who moved into larger communities between 2016 and 2018.Editor's Note: Click here for the source article, "Do end-of-life outcomes differ by assisted living memory-care designation?"

Fall prevention for the elderly: 13 strategies to keep them safe U.S. News & World Report, by Claire Wolters, ed. by Christine Comizion, MPH; 3/26/24Falls are the leading cause of injury in adults 65 and older – with reports showing about 14 million adults fall each year, according to the Centers for Disease Control and Prevention. ... According to the CDC, falls are also the leading cause of injury-related death in the 65-and-older population – and the fall death rate is growing.Here's what to know about what increases risk for falls in older adults, and get familiar with fall prevention tips and safety measures that can help reduce the risk.Editor's Note: This U.S. News article primes the pump. Preventing falls matters especially for vulnerable hospice patients as their disease progresses, and as they and/or family want the person to be as mobile as possible. What do your Incident Reports tell you about falls? What falls-specific education do you provide for your interdisciplinary teams? On-call staff? Family caregivers? Volunteers? What QAPI programs have addressed falls? 

What is the FAST scale for Alzheimer's?MedicalNewsToday, by Charlotte Lillis and medically reviewed by Shilpa Amin, MD, CAQ, FAAFP; 3/25/24The Reisberg Functional Assessment Screening Tool (FAST) is a scale that doctors use to diagnose and evaluate aspects of Alzheimer’s disease. ... This article provides an overview of the FAST tool, including a breakdown of its individual stages. It also outlines what to expect from the FAST evaluation, what the scale means for hospice care, and more.

Report: Alzheimer's and dementia caregivers total 840K in Florida, bear heavy burden NPR WMFE, by Joe Byrnes; 3/22/24The number of Floridians serving as caregivers for people with Alzheimer's and other dementias is an estimated 840,000, an increase of 13,000 in just one year, according to an annual report from the Alzheimer's Association. Caregiving takes a toll on families hit by the degenerative brain disease, but a new program from the Centers for Medicare and Medicaid Services could lessen that burden. ... [This] promising resource in the works is the Guiding an Improved Dementia Experience Model, an approach that includes the patient and caregiver. The GUIDE Model -- through the Centers for Medicare & Medicaid Services -- starts in July. 

Digital ‘communication bridge’ for seniors with aphasia is $13M closer to reality McKnights Senior Living; by Aaron Dorman; 3/5/24 An upcoming research program will examine the potential for telehealth and wearable sensors to address a specific and nasty form of aphasia. The University of Chicago was awarded $13.2 million by the National Institutes of Health to study the disease, as part of its five-year Communication Bridge Research Program. The university recently announced the grant windfall and has begun reaching out to potential participants for a clinical trial.  

Medicare’s new Dementia GUIDE Model: How can physicians, hospices, and home health agencies participate? Morgan Lewis Blog Post; 3/1/24If you have had a loved one suffer from dementia, you know the emotional, physical, and financial toll of this terrible disease. With advancements in dementia treatment, however, there is renewed hope on addressing this disease and increasing emphasis on fostering innovative care models. A central pillar of this effort is the Guiding an Improved Dementia Experience (GUIDE) model, announced by the US Department of Health and Human Service’s Centers for Medicare & Medicaid Services (CMS) in July 2023. This initiative—a new voluntary, nationwide alternative payment model—is designed to support Medicare beneficiaries with dementia, as well as their caregivers.

How to help elderly parents from a distance: Tech can ease logistical, emotional burden USA Today, by Marc Ramirez; 2/28/24 As a neuropsychologist trained in developing technology for cognitively impaired older adults, Alyssa Weakley’s research at the University of California, Davis, made her acutely aware of the challenges of long-distance caregiving. ... Soon, she and her family found themselves in a position shared by nearly 6 million other Americans, acting as caregivers from a complicated and often distressing distance. According to a 2020 AARP report, long-distance caregivers represent more than 1 in 10 of the country’s estimated 53 million family caregivers, meaning they live an hour or more from their care recipient; on average, they live about 450 miles away. Editor's Note: What systems do you have in place to communicate with and support family members who live long-distance, who never have the opportunity to meet with any hospice team members in person? 

Study gives credence to range of dementia caregiver decision toolsMcKnights Home Care, by Kristen Fischer; 2/27/24A new study analyzes some evidence-backed tools to help substitute decision-makers make choices to honor an individual’s medical, personal and end-of-life wishes. ... Substitute decision-makers are family members or friends of older adults who cannot speak for themselves (such as those with dementia). Data from the study, which was published on Saturday in Journal of the American Society of Geriatrics, was derived from 25 articles published between 2003 and 2022. 

ChatGPT analyzes speech patterns to identify Alzheimer’s 87 percent of the time, researchers showMcKnight's Senior Living, by Aaron Dorman; 2/9/24Since ChatGPT went live roughly 15 months ago, researchers have been studying whether artificial intelligence tools can be used to treat or predict Alzheimer’s... One of the main symptoms of dementia, even at earlier stages, is confusion or speech difficulties... ChatGPT was able to correctly identify Alzheimer’s 87% of the time, a new study shows.

Study highlights financial burden of dementia on older adults, familiesGeorgia State University - School of Public Health, by Sam Fahmy; 2/7/24A team of researchers from the Georgia State University School of Public Health, the University of Washington School of Pharmacy and the University of California San Francisco analyzed data from a national sample of more than 4,500 adults aged 70 and older to arrive at what are thought to be the first comparisons of out-of-pocket expenses by dementia status and care setting. The researchers found that the median adult with dementia in residential facilities such as assisted living centers spent 97% of their monthly income on long-term care. People with dementia in nursing homes spent nearly 83% of their monthly income on long-term care.