Understanding the influence of social context on care priorities among Black dementia patients and their caregivers Open Access
Free, Olivia (Spring 2024)
Abstract
Background: It is well documented that health outcomes are influenced by many factors. Socioeconomic conditions are the most significant factor, accounting for 40% of an individual’s health outcomes; medical care accounts for only 20% of an individual’s health outcomes. For this reason, it is important to closely consider the influence of social context factors in medical care plans. Historically, the traditional approach to care for dementia patients with comorbidities has led to fragmented care and often is not aligned with patients' priorities. Goal-directed care has been shown to increase patient and caregiver satisfaction, improve quality of life, and reduce costs.
Objectives: The objectives of this study were to 1) identify what matters most to patients with dementia and their caregivers and 2) understand how the social contexts of patients and their caregivers influence their priorities and goals in their medical care.
Methods: Twenty dyads of patients with varying stages of dementia and their caregivers completed a standardized geriatric assessment, and a semi-structured, dyadic qualitative interview with the physician to assess goals and priorities of care. Data were analyzed using thematic analysis and descriptive statistics. Dyad priorities and goals were identified after initial coding through a review of codes from thematic analysis. Interview transcripts were reviewed and analyzed for social context factors including social support, patient living situation, and caregiver employment. Social context factors were triangulated against caregiver burden levels. Priorities and goals were analyzed using Naik & Tinetti’s What Matters Most framework and were also triangulated by caregiver burden and level of social support.
Results: Eleven patients (55%) were unable to articulate goals and priorities of care during the interview. Of the nine patients who provided a priority or goal, improving memory (n=4) and maintaining their current level of independence (n=4) were the most common. Caregivers provided an average of 3.4 priorities with improving or maintaining functional independence and mobility (n=10) and getting more help at home with home health services (n=9) being top priorities among the sample. Social support was found to strongly influence caregiver priorities and this social context factor was also strongly related to caregiver burden level. All dyads found the physician-led discussion of goals and preferences enjoyable and helpful.
Conclusion: This study highlights the importance of the social context informed discussion of priorities and goals for underserved dementia patients and their caregivers. Considering the social contexts of patients and caregivers in the medical care plan has the potential to not only improve quality of care in this population but also acknowledge and address upstream determinants influencing health outcomes. Notably, there is an opportunity for the approach employed in this study to be applied widely to dementia care management in the U.S. healthcare system.
Table of Contents
Chapter I: Introduction and Overview 1
Chapter II: Literature Review 7
Overview of Dementia and What Matters Most 7
Theoretical Framework 23
Chapter III: Methods 31
Chapter IV: Results 44
Demographics of Dyads 44
Health of Patients 45
Behavioral Symptoms of Patient 46
Burden of Caregiver 46
Social Context Factors 48
Social Context Factors and Caregiver Burden 55
Categorizing Goals and Priorities 56
Patient Priorities and Goals 56
Caregiver Priorities and Goals 60
Chapter V: Discussion and Conclusions 68
Scope and Limitations 68
Summary and Conclusions 70
Implications and Opportunities for Future Research and Practice 74
References 76
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