RPD209 - “Nobody Told Us”: Inequities in End-Of-Life Dementia Care

Key Message : Findings from a national study reveal barriers to equitable end-of-life dementia care among Asian, Black, Latino, multiracial, and LGBTQ bereaved caregivers. Systemic oppression, including structural racism and xenophobia, shaped end-of-life care experiences, particularly as a driver of missed opportunities in communication, anticipatory guidance, and timely hospice support.

Abstract:

Background: In the United States, one in three older adults dies with or from dementia(1). Despite increasing hospice enrollment(2), minoritized racial, ethnic, and LGBTQ communities face persistent inequities in access to timely, high-quality end-of-life care(3-5).

Objective: To identify bereaved caregiver experiences with and barriers to obtaining high-quality hospice and end-of-life care for people with dementia in communities impacted by structural inequities.

Methods: We recruited bereaved caregivers of decedents with dementia from communities that experience health disparities. Participants completed a survey and up to two interviews about experiences with caregiving, end-of-life care, discrimination, and recommendations for change. We analyzed quantitative data descriptively and conducted both inductive and deductive coding of qualitative interviews, informed by discussions with an interdisciplinary team and community advisory board.

Results: Of 25 participants, 40% identified as Asian, 36% as Black, 16% as Latino, 3% as multiracial; 84% identified as women; 20% identified as LGBTQ, 64% were over age 65; 72% were adult children of the decedent. Among the 60% who reported the decedent using hospice, 20% received only days of hospice care; 8% received 6-12+ months of care. Just over half of the participants rated end-of-life care middling-to-bad. Reasons cited for receiving poorer care than others were age (40%), race, ethnicity, or nationality (36%), disability (20%), and weight (8%). End-of-life communication challenges reported by participants were often based in systemic racism and structural oppression, including: problems accessing language-concordant education and clinicians, missed opportunities for anticipatory guidance due to cultural biases or lack of access to healthcare, difficulty finding clinicians skilled in sensitive and tailored communication, inconsistent hospice admission criteria, and understaffed hospices.

Implications: We found concerning themes of miscommunication, lack of support, interpersonal discrimination, and systemic racism. We must center equity in efforts to improve palliative and end-of-life care for older adults with dementia and their caregivers.

References: 1. 2022 Alzheimer’s disease facts and figures. Alzheimers Dement J Alzheimers Assoc 2022; Available from: https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf
2. Harrison KL, Cenzer I, Smith AK, et al. Functional and clinical needs of older hospice enrollees with coexisting dementia. J Am Geriatr Soc 2023;71(3):785–98.
3. De Vleminck A, Morrison RS, Meier DE, Aldridge MD. Hospice Care for Patients With Dementia in the United States: A Longitudinal Cohort Study. J Am Med Dir Assoc 2017;
4. Lin P-J, Zhu Y, Olchanski N, et al. Racial and Ethnic Differences in Hospice Use and Hospitalizations at End-of-Life Among Medicare Beneficiaries With Dementia. JAMA Netw Open 2022;5(6):e2216260.
5. Hunt LJ, Gan S, Smith AK, et al. Hospice Quality, Race, and Disenrollment in Hospice Enrollees With Dementia. J Palliat Med 2023;26(8):1100–8.