Search

Person-centered care for people living with dementia has been associated with improved functional ability and quality of life, yet little is known about person-centered care in the home settings. Our objective was to explore home care worker perspectives on providing person-centered care for their clients living with dementia. Using secondary qualitative analysis of 22 semi-structured interviews with home care workers, we identified themes related to the Dementia Initiative's person-centered dementia care framework (Initiative, 2013). We found that home care workers acknowledged their client's personhood while also advocating for their needs. However, home care workers encountered barriers to providing person-centered care, including role limitations and challenging dynamics with other home care workers and family caregivers. This analysis can inform further approaches to better integrate home care workers in person-centered healthcare teams and improve how the needs of people living with dementia are identified and met in the home. [ABSTRACT FROM AUTHOR]

Background: Almost 11.3 million family caregivers of people with dementia must navigate the health insurance landscape to meet the complex medical and long‐term care needs of their family members. This study explores factors that influence family caregivers' decisions about insurance and how these choices affect the care and support people with dementia receive. Methods: Semi‐structured interviews were conducted from June 2022 to January 2023 with 15 family caregivers of people with dementia dual eligible for Medicaid and Medicare and enrolled in home‐based primary care in New York City. A set of open‐ended questions were asked exploring caregivers' perspectives on navigating insurance plans. Interviews were recorded, transcribed, and analyzed using thematic analysis with both deductive and inductive coding. Results: Analysis revealed three major themes: (1) challenges of Medicaid enrollment, (2) making do with existing insurance, and (3) mistrust of the insurance system. Initial enrollment in Medicaid compounded the stress of adjusting to caregiving. The enrollment process was impacted by clinical factors, financial factors, and input from providers and social workers; however, caregivers could not identify a centralized system for obtaining insurance information and support. Once Medicaid was in place, participants described advocating on behalf of their family member within the constraints of their current insurance plans (Medicare and Medicaid) and ensuring they had the necessary knowledge to understand their family member's coverage. Participants voiced a need for ongoing vigilance to ensure their family members received needed care and support. Conclusion: The challenges family caregivers experience when navigating insurance for their family members with dementia contribute to caregiver burden. Robust and centralized professional support for family members both immediately after a family member's dementia diagnosis and as the disease progresses could increase caregivers' capacity to make insurance decisions that best support their family members with dementia. [ABSTRACT FROM AUTHOR]

Paid caregivers (e.g., home health aides, home care workers) provide essential care to people with dementia living at home; this study explored family caregiver perspectives on the role and impact of paid caregivers in home-based dementia care. We conducted semi-structured interviews with family caregivers (n = 15) of people with advanced dementia who received long-term paid care at home in New York between October 2020 and December 2020. We found that given the vulnerability resulting from advanced dementia, family caregivers prioritized finding the "right" paid caregivers and valued continuity in the individual providing care. The stable paid care that resulted improved outcomes for both the person with advanced dementia (e.g., eating better) and their family (e.g., ability to work). Those advocating for high quality, person-centered dementia care should partner with policymakers and home care agencies to promote the stability of well-matched paid caregivers for people with advanced dementia living at home. [ABSTRACT FROM AUTHOR]

1. Identify factors that serve as either facilitators of or barriers to palliative care referral from the perspective of patients receiving systemic treatment for hepatocellular carcinoma, the most common type of liver cancer. 2. Name specific ways that future scientific inquiry might advance our understanding of these facilitators and barriers, including the development of tailored, embedded care models within liver cancer treatment programs. Interviews with people currently receiving treatments for advanced liver cancer reveal that in the absence of symptoms, they may not want or see a need for palliative care. Embedded palliative care, case finding, and stakeholder engagement are likely needed to develop effective and acceptable care models for this population. Little is known of the patient-based facilitators and barriers for palliative care delivery to people with advanced hepatocellular carcinoma (HCC), the most common primary liver cancer. This is crucial information to develop and test HCC-specific palliative care interventions. Because of improvements in treatment this population is living longer and palliative needs and preferences may be changing. Identify facilitators and barriers to palliative care delivery for people receiving systemic treatment for advanced stage HCC. Inclusion criteria included adults with advanced (Barcelona C) HCC receiving systemic treatment. Nineteen were enrolled in the study, and 11 completed semi-structured interviews about their experience. For English- and Spanish-speaking individuals interviews were conducted in English and Spanish respectively; a professional interpreter was used for others. The interview guide included questions about palliative care using the Center to Advance Palliative Care's public-facing definition. Interviews were transcribed/translated and verified, a code book was developed using open coding, and all interviews coded using axial coding. Median age was 64.9 years, 11% were women, 26% identified as Black, 21% identified as Asian, 21% identified as Hispanic/Latinx, and 50% of the interviews were conducted in English. Most participants felt positively toward palliative care but did not feel they needed it. Overall, facilitators identified included need for symptom management and worry about things getting worse. Barriers included lack of awareness, not wanting additional support or providers, and stigma (association with end-of-life, opioids, and being a burden on the system). Participants had a positive reaction to palliative care, however most did not feel it would benefit them at time of interview. A targeted, embedded model of palliative care may be well-suited for this population. Future work in this area should involve development and testing of care models (e.g. embedded and primary palliative care models) in collaboration with patients and families. [ABSTRACT FROM AUTHOR]

Despite the potential of paid caregivers (e.g., home health aides and other home care workers) to improve their clients' health-related outcomes, paid caregivers are rarely integrated in the healthcare team. Geriatrician's perspective on paid caregivers can inform healthcare team approaches that leverage the paid caregiver role to improve older adult health. This secondary qualitative analysis ( n = 9 geriatricians, n = 27 interviews) used thematic analysis to identify geriatrician perceptions of when paid caregivers do the most to support the health of older adults. Geriatricians perceived that paid caregiver contributions were greatest in the care of high-needs older adults (e.g., dementia) and that paid caregivers stepped up to fill healthcare gaps when families could not provide all needed support (e.g., no family). Future work should consider how to best integrate paid caregivers who are already providing health-related support into the care team and explore barriers to paid caregiver participation in health-related care more generally., Competing Interests: Declaration of Conflicting InterestsThe authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. This paper does not reflect the views of the U.S. Department of Veterans Affairs or the United States government.