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Introduction: More than 35% of hospice care recipients 65 and older have a dementia diagnosis. Yet family care partners of persons living with dementia report feeling unprepared to address their hospice recipient's changing needs nearing end of life. Hospice clinicians may have unique insight into the knowledge needs of family care partners and strategies for end-of-life dementia caregiving., Methods: Semi-structured interviews were conducted with 18 hospice physicians, nurse practitioners, nurses, and social workers. Interview transcripts were deductively analyzed using thematic analysis to examine clinicians' perspectives on gaps and strategies related to family care partner knowledge about end-of-life dementia caregiving., Results: We identified 3 themes related to gaps in family care partners' knowledge: dementia is a progressive, fatal disease; end-of-life symptoms and symptom management in persons living with advanced dementia; and understanding hospice goals and guidelines. Three themes related to clinicians' strategies to increase knowledge included: providing education; teaching strategies to facilitate coping and preparedness for end-of-life care; and communicating with empathy., Discussion: Clinicians perceive gaps in knowledge specific to dementia and end of life among family care partners. These gaps include a lack of understanding of Alzheimer's symptom progression and strategies to manage common symptoms. Recommendations for approaches to reduce knowledge gaps include providing education and strategies delivered with empathy toward the family care partner experience., Conclusion: Clinicians who work with persons living with dementia receiving hospice care have valuable insights regarding family care partners' gaps in knowledge. Implications on the training and preparation of hospice clinicians working with this care partner population are discussed., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

There is a need for understanding the breadth of interventions for caregivers of individuals receiving hospice care at home, given the important role caregivers play in caring and the negative outcomes (e.g., depression) associated with their caregiving. Previous reviews were limited in scope to certain types of interventions or patient populations. The objective of this scoping review was to broadly examine the interventions targeting caregivers who provide care to terminally ill patients in home, with the purpose of (1) describing the characteristics of these interventions, (2) discussing key outcomes, limitations, and knowledge gaps, (3) highlighting intervention strengths, and (4) proposing future research directions. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Intervention studies that met the inclusion criteria and that were published up until October 2022 were obtained from the following databases: Ovid MEDLINE, Ovid EMBASE, CINAHL (EBSCO), and The Cochrane Library (Wiley). We analyzed 76 studies describing 55 unique interventions that took place in 14 countries. Interventions were largely delivered by nurses ( n  = 18, 24%), followed by an interdisciplinary team ( n  = 16, 21%), a health care provider ( n  = 10, 13%), research staff ( n  = 10, 13%), social worker ( n  = 5, 7%), and others ( n  = 11, 15%). Six interventions (8%) were self-administered. The most measured outcome was caregiver quality of life ( n  = 20, 26%), followed by anxiety ( n  = 18, 24%) and burden ( n  = 15, 20%). Missing data on patient and caregiver characteristics (i.e., age, gender) were common, and less than half of studies ( n  = 32, 42%) reported race/ethnicity data. Our review highlighted the current state of interventions for caregivers of patients receiving hospice care at home. Many of the interventions were in the early phases of development, raising the need for future studies to look at efficacy, effectiveness, and the ability to implement interventions in real-world settings.

Background: A growing number of persons living with dementia (PLwD) die at home with hospice care. However, there is limited information describing the needs of dying, community-dwelling persons with dementia and their family care partners (FCPs). Understanding the range of challenges faced by these FCPs is requisite to developing resources and refining support infrastructure. The current study identifies caregiving challenges unique to this population and strategies FCPs use to address those challenges., Methods: Semi-structured interviews were conducted with 40 current or recently bereaved FCPs of home hospice patients living with dementia, recruited from geriatrics clinics and a hospice agency in the New York metropolitan area. A thematic analysis guided by deductive and inductive approaches was used to code interview transcripts, identify broader conceptual categories, and search for themes., Results: Three themes were identified related to challenges faced by FCPs: (1) managing emotions and reacting to behaviors associated with advanced dementia; (2) lack of knowledge and adequate information related to dementia: disease progression and caregiving skills; and (3) maintaining FCP well-being: self-care and caregiver burden. Three themes were identified that describe strategies FCPs of PLwD employ to cope with end-of-life caregiving demands: (1) accepting help from professional caregivers and hospice support services; (2) getting knowledge and information about dementia; and (3) pragmatic approaches and acceptance of signs and symptoms of disease progression., Conclusions: FCPs of PLwD near the end of life (EOL) face caregiving challenges unique to dementia and dying. While FCPs are resourceful in identifying novel strategies for managing burden and caregiving responsibilities, our results point to gaps in the current support infrastructure for this population at the EOL. Findings also identify areas of need for care partners navigating end-of-life issues., (© 2023 The American Geriatrics Society.)

Background: Palliative care consultations (PCC) improve end-of-life (EOL) care, although they may occur too late in an illness to effect the best outcomes. Evidence about the optimal timing of PCC is limited., Objective: To examine the associations between PCC timing and bereaved families' evaluation of care., Methods: A retrospective, cross-sectional analysis of data collected between October 2011 and September 2014 was conducted with 5,592 patients who died in a Veterans Affairs inpatient hospice/palliative care unit. The independent measure was the date of first documented PCC within 180 days of death. Outcomes came from the validated Bereaved Family Survey (BFS) and included one global and three subscale scores characterizing EOL care in the last month of life., Results: After adjustment for patient and facility characteristics, family members of veterans whose first PCC occurred 91-180 days before death were more likely to rate overall care as "excellent" compared with those whose PCC occurred 0-7 days before death, 67.9% versus 62.1%, respectively (adjusted odds ratio = 1.37; confidence interval [95% CI] 1.08-1.73). Mean scores on two of the three subscales also were significantly higher for veterans receiving PCC 31-90 days before the veteran's death compared with those who had their first PCC 0-7 days before death: Respectful Care and Communication, 13.6 versus 13.4, respectively (β = 0.26; 95% CI 0.11-0.41), and Emotional and Spiritual Support, 7.6 versus 7.4, respectively (β = 0.22; 95% CI 0.03-0.41)., Conclusions: Earlier PCC is associated with greater family satisfaction with care. Strategies that are aimed at conducting PCC earlier in life-limiting illness are needed.