Evaluating racial disparities in healthcare system utilization and caregiver burden among older adults with dementia

Pereira, Carolina; LaRoche, Ashley; Arredondo, Beth C.; Pugh, Erika; Disbrow, Elizabeth A.; Reekes, Tyler; Brickell, Emily; Boettcher, A; Sawyer, Robert John

doi:10.1080/13854046.2021.1951844

Cited by 10 publications

(34 citation statements)

References 38 publications

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“…However, concerns about discrimination also arose in our findings, relating to the specific backgrounds of the participants, which can result in greater complexities older lesbian and gay adults' caregiving. Similar issues are found among other marginalised communities such as Indigenous and People of Colour communities, and people with disabilities and neurodivergencies 25,26 . While not reported in this study, other studies have also noted that informal caregiving could be a way to avoid potential experiences of discrimination in formal care settings 4,5,8,11,13,14,16 .…”

Section: Discussionsupporting

confidence: 80%

“…Similar issues are found among other marginalised communities such as Indigenous and People of Colour communities, and people with disabilities and neurodivergencies. 25,26 While not reported in this study, other studies have also noted that informal caregiving could be a way to avoid potential experiences of discrimination in formal care settings. 4,5,8,11,13,14,16 The broader history of discrimination towards lesbian women and gay men has resulted in a community-driven imperative in which individuals tend toward taking care of each other and less toward engaging with formal services.…”

Section: Discussionmentioning

confidence: 72%

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Experiences of informal caregiving among older lesbian and gay adults in Australia

et al. 2022

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Objective: This study examined older lesbian and gay adults' experiences regarding informal caregiving, including challenges and positive aspects of caregiving.Methods: Interviews were conducted with 16 lesbian women and gay men in Australia, aged 60+, who were engaged in informal caregiving. Analyses involved a qualitative thematic approach.Results: Most participants were caring for a friend or partner and regarded caregiving as a form of love and did not seek external support despite noting several impacts. Some participants found that they too were beginning to require care.For some, formal care was being considered, but with a degree of reluctance. Conclusions:Older lesbian and gay adult caregivers experience a range of challenges and support needs in relation to their experiences with the caregiving role. This research highlights a need for ensuring that caregiving policies and practices be responsive to the experiences and challenges faced by older lesbian and gay people.

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Section: Discussionsupporting

confidence: 80%

Section: Discussionmentioning

confidence: 72%

Experiences of informal caregiving among older lesbian and gay adults in Australia

et al. 2022

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“…Alzheimer's disease and related dementias (ADRD) comprise a leading cause of death in the United States (US) (Centers for Disease Control & Prevention, 2021). The prevalence of ADRD in the US is estimated to reach nearly 14 million by 2050 (Alzheimer's Association, 2022;Pereira et al, 2022).…”

Section: Applications Of Study Findingsmentioning

confidence: 99%

“…However, evidence indicates that the emergency department admission and hospitalization rate increases as individuals' cognitive impairment progresses (Chen et al, 2021). Sociodemographic characteristics (e.g., education, race, and ethnicity) and health factors (e.g., cognitive impairment, limitations in activities of daily living, and the number of chronic conditions, collectively known as frailty) are associated with disparities in ACP and healthcare utilization and the type of healthcare settings used, such as home or hospital (Mah et al, 2021;Pereira et al, 2022;Rahemi, 2019;Rahemi et al, 2019;Rahemi & Williams, 2016Suntai et al, 2022). For example, certain racial groups, including Black individuals with dementia, may have inadequate access to information to make informed end-of-life decisions (Bonner et al, 2021) and may underutilize ACP because of racism, discrimination, and/or inequitable treatment within the health system (Bonner et al, 2021;McDonnell & Idler, 2020).…”

Section: Applications Of Study Findingsmentioning

confidence: 99%

“…Alzheimer’s disease and related dementias (ADRD) comprise a leading cause of death in the United States (US) (Centers for Disease Control & Prevention, 2021). The prevalence of ADRD in the US is estimated to reach nearly 14 million by 2050 (Alzheimer’s Association, 2022; Pereira et al, 2022). In addition to significant risk factors for ADRD (e.g., advanced age, genetic predisposition, and low education level), chronic conditions, such as cardiovascular problems, have been associated with increased rates of cognitive impairment and dementia diagnosis (Alzheimer’s Association, 2022).…”

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confidence: 99%

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Healthcare Utilization and Advance Care Planning among Older Adults Across Cognitive Levels

et al. 2023

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This study examined the impact of advance care planning (ACP) on healthcare utilization among older adults with normal cognition and impaired cognition/dementia. Using datasets from the Health and Retirement Study, we conducted a cross-sectional study on 17,698 participants aged 51 years and older. Our analyses included survey descriptive and logistic regression procedures. ACP measures included a living will and durable power of attorney for healthcare. Healthcare utilization was measured using the days spent in hospitals, hospice care, nursing homes, and home care. Of the participants, 77.8% had normal cognition, and 22% had impaired cognition/dementia. The proportion of impaired cognition/dementia was higher among racially minoritized participants, single/widowed participants, and those who lived alone and were less educated. The results showed that having an ACP measure was associated with longer stays in hospitals, nursing homes, and home healthcare in all participants.

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Mapping racial and ethnic healthcare disparities for persons living with dementia: A scoping review

Hinton,

Tran,

Peak

et al. 2024

Alzheimer's & Dementia

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INTRODUCTIONWe set out to map evidence of disparities in Alzheimer's disease and Alzheimer's disease related dementias healthcare, including issues of access, quality, and outcomes for racial/ethnic minoritized persons living with dementia (PLWD) and family caregivers.METHODSWe conducted a scoping review of the literature published from 2000 to 2022 in PubMed, PsycINFO, and CINAHL. The inclusion criteria were: (1) focused on PLWD and/or family caregivers, (2) examined disparities or differences in healthcare, (3) were conducted in the United States, (4) compared two or more racial/ethnic groups, and (5) reported quantitative or qualitative findings.RESULTSKey findings include accumulating evidence that minoritized populations are less likely to receive an accurate and timely diagnosis, be prescribed anti‐dementia medications, and use hospice care, and more likely to have a higher risk of hospitalization and receive more aggressive life‐sustaining treatment at the end‐of‐life.DISCUSSIONFuture studies need to examine underlying processes and develop interventions to reduce disparities while also being more broadly inclusive of diverse populations.

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Evaluating racial disparities in healthcare system utilization and caregiver burden among older adults with dementia

Cited by 10 publications

References 38 publications

Experiences of informal caregiving among older lesbian and gay adults in Australia

Experiences of informal caregiving among older lesbian and gay adults in Australia

Healthcare Utilization and Advance Care Planning among Older Adults Across Cognitive Levels

Mapping racial and ethnic healthcare disparities for persons living with dementia: A scoping review

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