As the locus of long-term care in the United States shifts from institutions to the community, paid caregivers (i.e., home health aides, personal care attendants) are providing more hands-on care to persons with dementia living at home. Yet, little is known about how family caregivers engage with paid caregivers. We conducted in-depth, semi-structured interviews (n = 15) with family caregivers, of persons living at home with severe dementia, and enriched our findings with data from a second cohort of family caregivers of persons with dementia (n = 9). Whether paid caregivers were hired privately or employed via a Medicaid-funded agency, family caregivers reported that they needed to manage paid caregivers in the home. Core management tasks were day-to-day monitoring and relationship building with family caregivers; training paid caregivers and coordinating care with homecare agencies was also described. In order to support family caregivers of individuals with dementia at home, it is important consider their preferences and skills in order to effectively manage paid caregivers. Support of efforts to build a high-quality paid caregiving workforce has the potential to improve not only care delivered to persons with dementia, but the experiences of their family caregivers.

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.

Individuals living at home with dementia often rely on a team of caregivers and health care providers. Yet little is known about how the role of paid caregivers within this team is determined. We identified patients with moderate to severe dementia (n=9) and conducted individual interviews with their care teams (family caregiver, paid caregiver, physician) (n=27) to explore perspectives on paid caregiver roles. Participants disagreed on who determined the paid caregiver’s role. Agencies were perceived to set limitations on the scope of care (particularly by physicians) but agency care plans were often seen as inadequate and failing to capture important nuances of care. Most family caregivers believed they should guide what paid caregivers did in the home, while most paid caregivers reported relying on their own experience and knowledge. Understanding and addressing these differing perceptions is critical to improving the quality of paid care in the home.

Paid caregivers (e.g., personal care aides, home health aides, other direct care workers) provide essential care that allows people with dementia to remain living at home, yet little is known about the lived experience of this care. This project uses multiple perspective, qualitative longitudinal interviews to explore paid caregiver role in home-based dementia care. We conducted one-on-one interviews via telephone or zoom with the family caregiver, paid caregiver, and geriatrician of an individual person with moderate or severe dementia (n=9) living at home in New York City. After an initial interview, up to 2 additional interviews (at 3 and 6 month intervals) were also conducted for a total of 75 interviews with 29 unique respondents. Interviews were audio-recorded, transcribed, and analyzed using the framework method of analysis. Interviews revealed nuanced care arrangements, but paid caregiver role in care remained largely stable over time. Key findings include: (1) Family caregivers played a primary role in determining overall paid caregiver role in care, (2) Paid caregivers describe the emotional components of caregiving (e.g. being “like family”, having patience) more frequently than families or doctors, and (3) Doctors rarely engage with paid caregivers unless family involvement is limited. The unique structure of each triad emphasizes the importance of person-centered dementia home care. Formal care plans may not reflect the nuances of care arrangements and responsibilities. Rather than prescriptive standards for home care, improved communication and clear expectation setting may help meet the complex needs of people with dementia and their families.

e24162 Background: People with advanced-stage hepatocellular carcinoma (HCC) are living longer given improved treatment effectiveness, yet we know little of their unmet palliative and supportive care needs. Previous studies of palliative care in populations of people facing liver diseases and liver cancer have cited difficulty with recruitment. Methods: This is a cross-sectional study at a single academic medical center. Participants are recruited from a multi-specialty liver cancer practice that includes surgery, interventional radiology, and medical and radiation oncology. Treating physicians identify appropriate participants from a list of pre-screened eligible individuals generated by the study team. Once enrolled validated survey instruments are used to collect data at two time points separated by one month and a qualitative interview is conducted that focuses on the experience of living with HCC. PDSA framework was used to improve recruitment procedures to a rate of 3-4 per month. Results: During the first four months we identified 19 potential participants. Of these, ten were ineligible: four did not meet timing criteria (enrollment before treatment initiation); three lacked English proficiency; and three were identified by their physician as not appropriate for the study. Of the remaining nine potential participants, four were unable to be contacted by phone, two were uninterested (including one who specifically ended the call after hearing the term palliative care), one was lost to follow-up, and two were consented and enrolled. In response, the following modifications were made to the protocol: (1) Medical eligibility criteria were liberalized so that enrollment could occur at any time during treatment; (2) a protocol to involve trained interpreters (in-person when possible) was implemented and a study team member who can conduct qualitative interviews in Spanish was added; (3) the title of the study was changed to more accurately focus on understanding quality of life (from “Palliative Care for People Facing HCC”) to address patient and physician concern; and (4) recruitment efforts are now focused on in-person introduction of the study to develop rapport. Since implementation of these changes, enrollment doubled in just one month. Conclusions: We identified actionable protocol modifications to increase study enrollment. Liberalized inclusion criteria, language inclusivity, and careful attention to stigma around palliative care may be generalizable to similar studies about supportive care, palliative care, and hospice in the population of people facing liver cancer. Additionally, avoiding language-based exclusions for lack of resources (rather than scientific ones) increases inclusivity in research and will allow for a more meaningful and accurate description of all our participants’ needs.