Caregiver Experiences and Burden in Moderate-Advanced Dementia With Lewy Bodies.

Background and Objectives: Dementia with Lewy bodies (DLB) is a common degenerative dementia, but research on caregiver experiences in late stages is lacking. This study aimed to investigate the caregiving experience in moderate-advanced DLB to identify opportunities for improving care and support. Methods: Dyads of individuals with moderate-advanced DLB and their primary informal caregivers were recruited from specialty clinics, advocacy organizations, and research registries. The study collected demographics, disease-related measures, and measures of the caregiver experience relating to caregiver support, burden, grief, self-efficacy, depression, quality of life, and coping. Spearman correlation coefficients and Wilcoxon rank-sum tests evaluated the relationships of caregiver measures with patient and caregiver variables with adjustments for multiple testing. Results: Caregivers (n = 143) were mostly women (83.5%) and spouses (84.7%) (mean age 68 years; range 37-85). Almost 40% reported high burden and/or depression. Caregiver measures correlated with fluctuation and behavioral symptom severity, sleepiness, and autonomic symptoms of the person with DLB. Higher burden correlated with worse caregiver quality of life, higher depression, and grief. Greater self-efficacy, social support, and resilience correlated with lower caregiver burden. The most frequently reported caregiver concerns were being unable to plan for the future, having to put the needs of the person with DLB ahead of the caregiver's own needs, and worry that the person with DLB would become too dependent on the caregiver, but many additional concerns were endorsed. Caregivers were generally satisfied with medical team support. The lowest reported satisfaction related to information regarding disease progression and how well medical teams shared information with each other. Discussion: Various patient-related and caregiver-related factors influence caregiver experiences in moderate-advanced DLB. Clinicians can target caregiver needs by providing support resources and DLB education and treating bothersome patient symptoms. Future research should investigate what interventions can modify and improve caregiver experiences in advanced DLB and identify therapeutics for patient symptoms currently without adequate treatments (e.g., fluctuations, daytime sleepiness). Trial Registration Information: NCT04829656.

Patient- and proxy-reported quality of life in advanced dementia with Lewy bodies.

INTRODUCTION: Little is known regarding quality of life (QoL) in dementia with Lewy bodies (DLB), particularly in advanced stages. METHODS: Dyads of individuals with moderate-advanced DLB and their primary caregivers were recruited from specialty clinics, advocacy organizations, and research registries. The study collected demographics, disease-related measures, and measures of patient/caregiver experiences. RESULTS: The Quality of Life in Alzheimer's Disease (QoL-AD) was completed by the person with DLB and the caregiver (proxy) in 61 dyads; 85 dyads had only a proxy-completed QoL-AD. Patient- and proxy-reported scores were moderately correlated (r = 0.57, P < 0.0001). Worse patient-reported QoL correlated with daytime sleepiness, autonomic symptom burden, and behavioral symptoms. Proxy ratings correlated with dementia severity, daytime sleepiness, behavioral symptoms, dependence in activities of daily living, and caregiver experience measures. DISCUSSION: Patient- and proxy-reported quality of life (QoL) should be assessed separately in advanced DLB. Some symptoms associated with QoL have available therapeutic options. Research is needed regarding strategies to optimally improve QoL in DLB. HIGHLIGHTS: Patient and proxy quality of life (QoL) ratings had moderate correlation in advanced dementia with Lewy bodies. Daytime sleepiness affected patient- and proxy-reported QoL. Behavioral symptoms affected patient- and proxy-reported QoL. Autonomic symptom burden affected patient-reported QoL. Dementia severity, dependence, and caregiver experiences affected proxy ratings.

Mood Lifters for Seniors: Development and Evaluation of an Online, Peer-Led Mental Health Program for Older Adults.

Effective, scalable mental health programs are greatly needed for older adults. In this study, Mood Lifters-a peer-led, community-based program promoting mental well-being-was adapted to more specifically address the needs of older adults. Two groups completed the 14-week program via Zoom. A total of 24 participants enrolled (M age = 72 years), with 20 (83%) completing the program. Compared to baseline, program completers showed significant improvements in depression symptoms (p < .01), perceived stress (p = .04), sleep quality (p < .01), physical activity (p < .01), and brain health behaviors (p = .01), with improvements maintained at 1-month follow-up. No significant changes were reported in participants' anxiety, loneliness, or resilience. Participant ratings of program satisfaction were very high (M = 4.75/5). Results suggest Mood Lifters for Seniors is feasible to disseminate and acceptable to older adults, with preliminary evidence of benefits in several mental health domains. Future randomized trials with larger, more diverse samples are needed to confirm program benefits.

Protocol for an observational cohort study identifying factors predicting accurately end of life in dementia with Lewy bodies and promoting quality end-of-life experiences: the PACE-DLB study.

INTRODUCTION: Dementia with Lewy bodies (DLB) is one of the most common degenerative dementias. Despite the fact that most individuals with DLB die from complications of the disease, little is known regarding what factors predict impending end of life or are associated with a quality end of life. METHODS AND ANALYSIS: This is a multisite longitudinal cohort study. Participants are being recruited from five academic centres providing subspecialty DLB care and volunteers through the Lewy Body Dementia Association (not receiving specialty care). Dyads must be US residents, include individuals with a clinical diagnosis of DLB and at least moderate-to-severe dementia and include the primary caregiver, who must pass a brief cognitive screen. The first dyad was enrolled 25 February 2021; recruitment is ongoing. Dyads will attend study visits every 6 months through the end of life or 3 years. Study visits will occur in-person or virtually. Measures include demographics, DLB characteristics, caregiver considerations, quality of life and satisfaction with end-of-life experiences. For dyads where the individual with DLB dies, the caregiver will complete a final study visit 3 months after the death to assess grief, recovery and quality of the end-of-life experience. Terminal trend models will be employed to identify significant predictors of approaching end of life (death in the next 6 months). Similar models will assess caregiver factors (eg, grief, satisfaction with end-of-life experience) after the death of the individual with DLB. A qualitative descriptive analysis approach will evaluate interview transcripts regarding end-of-life experiences. ETHICS AND DISSEMINATION: This study was approved by the University of Florida institutional review board (IRB202001438) and is listed on clinicaltrials.gov (NCT04829656). Data sharing follows National Institutes of Health policies. Study results will be disseminated via traditional scientific strategies (conferences, publications) and through collaborating with the Lewy Body Dementia Association, National Institute on Aging and other partnerships.

Caregiver-Reported Barriers to Quality End-of-Life Care in Dementia With Lewy Bodies: A Qualitative Analysis.

OBJECTIVE: This study investigated barriers to quality end-of-life (EOL) care in the context of dementia with Lewy bodies (DLB), one of the most common degenerative dementias in the United States. METHODS: The study consisted of telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years. Interviews used a semi-structured questionnaire. Investigators employed a qualitative descriptive approach to analyze interview transcripts and identify common barriers to quality EOL care. RESULTS: Thirty participants completed interviews. Reported barriers to quality EOL experiences in DLB pertained to the DLB diagnosis itself and factors relating to the US health-care system, facilities, hospice, and health-care providers (physicians and staff). Commonly reported barriers included lack of recognition and knowledge of DLB, lack of education regarding what to expect, poor coordination of care and communication across health-care teams and circumstances, and difficulty accessing health-care resources including skilled nursing facility placement and hospice. CONCLUSION: Many identified themes were consistent with published barriers to quality EOL care in dementia. However, DLB-specific EOL considerations included diagnostic challenges, lack of knowledge regarding DLB and resultant prescribing errors, difficulty accessing resources due to behavioral changes in DLB, and waiting to meet Medicare dementia hospice guidelines. Improving EOL experiences in DLB will require a multifaceted approach, starting with improving DLB recognition and provider knowledge. More research is needed to improve recognition of EOL in DLB and factors that drive quality EOL experiences.

The Road Ahead in Education: Milestones for Geriatric Psychiatry Subspecialty Training.

OBJECTIVE: The Accreditation Council of Graduate Medical Education (ACGME) Milestone Project is the next step in a series of changes revamping the system of graduate medical education. In 2013 the ACGME completed the general psychiatry milestones. The ACGME then pursued creation of milestones for accredited psychiatric subspecialty fellowships. This article documents the work of the geriatric psychiatry subspecialty milestones work group. It reports the history and rationale supporting the milestones, the milestone development process, and the implications for geriatric psychiatry fellowship training. METHODS: In consultation with the American Association for Geriatric Psychiatry, the American Board of Psychiatry and Neurology, and the ACGME Psychiatry Residency Review Committee, the ACGME appointed a working group to create the geriatric psychiatry milestones using the general psychiatry milestones as a guide. CONCLUSION: The geriatric psychiatry milestones are the result of an iterative process resulting in the definition of the characteristics vital to a fellowship-trained geriatric psychiatrist. It is premature to assess their effect on psychiatric training. The true impact of the milestones will be determined as each training director uses the milestones to re-evaluate their program curriculum and the educational and clinical learning environment. The ACGME is currently collecting the information about the milestone performance of residents and fellows to further refine and determine how the milestones can best be used to assist programs in improving training.

Later-life depression and heart failure.

Using a case history to illustrate key points, this article (1) highlights depression criteria, prevalence, and later-life depression presentations; (2) discusses factors contributing to later-life depression; (3) reviews the interplay between heart failure and later-life depression; and (4) suggests screening and treatment recommendations for depression in patients with heart failure.

Race, gender, and psychiatrists' diagnosis and treatment of major depression among elderly patients.

OBJECTIVE: This study examined psychiatrists' contributions to racial and gender disparities in diagnosis and treatment among elderly persons. METHODS: Psychiatrists who volunteered to participate in the study were randomly assigned to one of four video vignettes depicting an elderly patient with late-life depression. The vignettes differed only in terms of the race of the actor portraying the patient (white or African American) and gender. The study participants were 329 psychiatrists who attended the 2002 annual meeting of the American Psychiatric Association. RESULTS: Eighty-one percent of the psychiatrists assigned the elderly patient a diagnosis of major depression. Patients' race and gender was not associated with significant differences in the diagnoses of major depression, assessment of most patient characteristics, or recommendations for managing the disorder. However, psychiatrists' characteristics, particularly the location of the medical school at which the psychiatrist was trained (United States versus international), were significantly associated with a number of variables. CONCLUSIONS: Given standardized symptom pictures, psychiatrists are no less likely to diagnose or treat depression among African-American elderly patients than among other patients, which suggests that bias based simply on race is not a likely explanation for racial differences in diagnosis and treatments found in earlier clinical studies. The impact of psychiatrists' having trained at international medical schools on diagnosis, treatment, and judgment of several patient attributes may indicate the need for targeted educational initiatives for aging and cultural competency.