Understanding and Improving Inequities in Palliative Care for Older Adults with Advanced Dementia and Limited-English Proficiency: A Mixed-Methods Evaluation

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PROJECT SUMMARY Older adults with Alzheimer's Disease and Related Dementias and limited-English proficiency (LEP) are at high risk of receiving suboptimal, goal-discordant care because of language and cultural barriers to effective communication about goals of care. Palliative care provides a way to improve quality of life and facilitate goal- concordant care by supporting effective person-family-clinician communication, but is under-utilized by older adults with Dementia and LEP and their families. No studies have sought to identify targets for intervention to address barriers to palliative care at multiple levels (i.e., patient/family, clinician, system, and community- levels) for this vulnerable population. Addressing this gap will be essential for the development of effective interventions to improve the quality of care for older adults with Dementia and LEP. The long-term goal of this work is to develop, evaluate, and disseminate interventions to facilitate culturally-sensitive palliative care for older adults with Dementia and LEP and their families. The rationale for this study is that before effective culturally- and linguistically-appropriate interventions to improve palliative care for older adults with Dementia and LEP can be developed, quantitative and qualitative data is needed to evaluate the scope of existing inequities and identify modifiable multi-level barriers to the delivery of high-quality palliative care for this population. Aim 1 utilizes quantitative methods to compare the quality of care received by decedents with advanced Dementia and LEP to those with English proficiency in four key palliative care domains (utilization of care, documentation of patient goals and preferences, symptom assessment, and circumstances of death) using EHR-based quality metrics and novel machine learning methods. Aim 2 utilizes qualitative interviews with key stakeholders (older adults with Dementia and LEP and their family members, caseworker-cultural mediators and interpreters, and clinicians and administrators) to identify modifiable targets for intervention across multiple levels. Aim 3 utilizes qualitative interviews with leaders of community-based organizations to assess community-level resources and capacity to support high quality palliative care for older adults with Dementia and LEP. Our interdisciplinary team is experienced in Alzheimer's Disease and Related Dementia research, community engagement with LEP populations, and quantitative and qualitative methods. The proposal is innovative because it evaluates multi-level barriers to palliative care across three diverse LEP populations (Latinx, Chinese, and Vietnamese), and uses machine learning methods to evaluate the quality of care across several palliative care domains in a large health system. The proposed research is significant because these data will enable the identification and prioritization of multi-level targets for the development of culturally and linguistically-appropriate interventions to improve palliative care for older adults with Dementia and LEP. Ultimately, this work will advance a model of care that facilitates goal-concordant, high-quality care for older adults with Dementia and LEP and supports the palliative care needs of their family members.