Literature Review

Four July 4th tips for families caring for loved ones with dementia Alzheimer's Association; 6/27/24 Fireworks and gatherings are staples of the 4th of July holiday, but these can create unique challenges for someone living with dementia. ... “Celebrating Independence Day can still be a fun, enjoyable experience for families impacted by dementia-related illnesses by making the proper adaptations such as being cautious about watching fireworks due to loud noises. It requires thoughtful planning to ensure their safety, comfort, and enjoyment.” said Jennifer Reeder, LCSW, SIFI, AFA’s Director of Educational and Social Services. “Being proactive, prepared, and adaptable, and creating a safe space, are the best ways caregivers can create a dementia-friendly 4th of July for their loved ones.” AFA encourages family caregivers to follow these four tips for the 4th of July:

Harn Art Museum encourages woman with Alzheimer’s to move again ABC TV WCJB-20; Gainesville, FL; by Kayla Lewis; 6/28/24 Pat Mclaurin’s Alzheimer’s has progressed since her daughter, Diana Dodds took her on a bucket list trip in 2022. ... “So my mom would never use a walker or a cane. She would be more likely to try to hit me with it then use it, so she’s fiercely independent, yet she knows right now she cannot really walk without falling,” Dodds shared. “She’s always grabbing for walls just in the house.” ... Pat used to walk 3-5 miles a day, but in January slowed down. They decided to test out their own walker on a trip to the Harn Museum of Art in Gainesville, but her mom didn’t like it. However, the museum offers walkers and Pat loved them. Diana tells her it’s like a shopping cart. “Four wheels, it has higher bars, it had brakes on it. It felt more like a shopping cart because of the seat,” Dodds shared. Diana described the walker they gave her mother to Haven Hospice officials who then brought her mom a walker just like it a couple days later. “It’s inspiring because I’ve seen her push through every step trying to keep moving, and I want her to be able to keep moving,” said Dodds. 

Alzheimer’s disease and dementia care: 5 Medicare benefits consumers should know Globe Newswire, KELOLAND Media Group; by medicareresources.org; 6/19/24 With the Food and Drug Administration’s approval of new medications like Leqembi, there’s increased focus on ways Medicare can help alleviate the significant costs of Alzheimer’s and dementia care. ... “Alzheimer’s disease and other forms of dementia can come with a heavy financial burden as well as an emotional toll, which is why it’s critical patients and families understand when and how Medicare can help mitigate costs,” said Louise Norris, a health policy analyst for medicareresources.org. “People may be surprised, especially about new coverage of diagnostic tests and medications." ... Here are five critical benefits medicareresources.org says consumers might not know about:

Exploring Experiences of Pain Management Among Family Caregivers of Community-Dwelling Older Adults With DementiaAmerican Journal of Hospice and Palliative Care; by Hui Zhao, Pamela A Kulbok, Ishan C Williams, Carol Manning, Jeongok G Logan, Rafael D Romo; 8/24Pain is often underreported and under-treated in older adults with dementia. The role of family caregivers (FCGs) in managing pain for their loved ones with dementia living in community has been significantly burdensome. ... Family caregivers follow their values to make decisions in pain management. Barriers existed for effective pain management. Adaptation and support from professional or formal caregivers greatly improved FCGs' perception of their competence in pain management. The finding underscores the need for further research and the development of interventions aimed at enhancing FCGs' perception of self-efficacy in this crucial aspect of caregiving.

Psychosocial distress among spouses of persons with dementia before and after their partner's deathJournal of the American Geriatrics Society; by Ashwin A Kotwal, Irena Cenzer, Lauren J Hunt, Claire Ankuda, Jacqueline M Torres, Alexander K Smith, Melissa Aldridge, Krista L Harrison; 6/24Results emphasize a need for clinical and policy approaches to expand support for the psychosocial needs of spouses of partners with dementia in the years before their partner's death rather than only bereavement.Publisher's Note: Also see McKnight's Long-Term Care News story Spousal caregivers need emotional support before losses, not just after, study finds.

Bidirectional associations of depressive symptoms and cognitive function over timeJAMA Network Open; by Jiamin Yin, Amber John, Dorina CadarIn this longitudinal analysis of 8268 eligible participants, greater levels of depressive symptoms at study baseline and an accelerated change in depressive symptoms over time were associated with faster memory decline. In reverse, a steeper change in memory was also reciprocally associated with a more rapid change in depressive symptoms over time.Publisher's Note: Also see McKnight's Long-Term Care News story Depression, memory decline trigger each other in older adults, study finds.

4 percent of those aged 65+ have dementia diagnoses: reportMcKnight's Senior Living; by Kimberly Bonvissuto; 6/14/24Four percent of US adults aged 65 or more years have a dementia diagnosis, with rates of dementia increasing with age, according to newly released data. Data from the 2022 National Health Interview Survey, or NHIS, revealed that the rate of dementia diagnoses ranged from 1.7% for adults aged 65 to 74 years to 13.1% in those 85 and older, according to the National Health Statistics Reports issue released Thursday by the Centers for Disease Control and Prevention. ... Among all residential care communities, 42% of residents have diagnoses of Alzhiemer’s disease or other dementias, according to the report. By comparison, 31% had heart disease, and 29% had depression.

Navigating Aging: New help for dealing with aggression in people with dementia Northern Kentucky Tribune; by Judith Graham, KFF Health News; 6/9/24Caring for older adults with dementia is stressful, especially when they become physically or verbally aggressive, wander away from home, develop paranoia or hallucinations, engage in inappropriate or repetitive behaviors, or refuse to let caregivers help them. Upward of 95% of patients experience these neuropsychiatric symptoms of dementia, which tend to fluctuate over time and vary in intensity. They’re the primary reasons people with dementia end up in assisted living facilities or nursing homes. At some point, families and friends trying to help at home simply can’t manage. “When people think about dementia, they usually think about forgetfulness and memory impairment,” said Mary Blazek, director of the geriatric psychiatry clinic at the University of Michigan. “But it’s behavioral and psychological disturbances that are most disruptive to patients’ and caregivers’ lives.”

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?"