Experiences of Caregivers of Dementia Patients with an Integrated Primary Care Model Público

Abstract

Few U.S. dementia care programs are led by advanced practice registered nurses (APRNs), including a dementia patient-centered medical home, the Integrated Memory Care Clinic (IMCC) at Emory Healthcare. To our best knowledge, the IMCC is the only U.S. dementia care program where clinicians provide primary care and dementia care simultaneously.

The purpose of this study was to quantitatively and qualitatively explore the experiences of caregivers of persons living with dementia (PLWD) and PLWD (as reported by their caregivers) at the IMCC.

This longitudinal prospective cohort study employed quantitative and qualitative methods. The study began with a scoping review of the U.S. dementia care programs since 2011. Caregivers participated in three assessments (at baseline, then approximately three and six months post-baseline) that evaluated caregivers’ health status and psychological well-being and PLWDs’ dementia-related symptoms and quality of life. Forty-nine caregivers completed the baseline assessment. Mixed linear models were used to evaluate changes over time in client-centered outcomes. As caregivers were completing the baseline assessment, a sub-group of 12 caregivers was conveniently sampled for telephone qualitative interviews six months post-baseline.

Five outcomes demonstrated significant decreases (signifying improvements) when time was the only predictor in the model: caregivers’ distress relative to their PLWDs’ delusions (p=0.048) and their PLWDs’ anxiety (p=0.018), and severity of PLWDs’ delusions (p=0.032), depressive symptoms (p<0.001), and total symptom severity (p=0.013). When accounting for the total number of visits to the clinic the clients made, time no longer significantly predicted changes in caregivers’ distress relative to their PLWDs’ delusions. When accounting for the total number of visits to the clinic or PLWDs’ total number of comorbidities besides dementia, time no longer significantly predicted changes in PLWDs’ total symptom severity. Two features characterizing caregivers’ experience of the clinic were discovered: the IMCC as the wished-for model of dementia care and ways to improve the IMCC.

This study provides quantitative and qualitative descriptive data on caregivers’ experience within the IMCC. Since this study did not have a comparison group, the outcomes cannot be attributed to the IMCC. Future experimental or quasi-experimental studies may elucidate the effect of the IMCC on client-centered outcomes.

Table of Contents

Section of the dissertation

Page Number

Introduction 1

Specific Aims 3

References for the Introduction 28

Figure 1 for the Introduction 43

Scoping Review 44

References for the Scoping Review 73

Figure 1 for the Scoping Review 90

Table 1 for the Scoping Review 91

Table 2 for the Scoping Review 93

Table 3 for the Scoping Review 124

Table 4 for the Scoping Review 150

Table 5 for the Scoping Review 158

Table 6 for the Scoping Review 165

Quantitative Results 186

Table 1 for the Quantitative Results 215

Table 2 for the Quantitative Results 220

Table 3 for the Quantitative Results 225

Table 4 for the Quantitative Results 231

Qualitative Results 233

Table 1 for the Qualitative Results 272

Conclusion 274

About this Dissertation

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School	Laney Graduate School
Department	Nursing
Degree	Ph.D.
Submission	Dissertation
Language	English
Research Field	Health Sciences, Nursing
Palavra-chave	caregivers dementia Alzheimer's disease
Committee Chair / Thesis Advisor	Kenneth Hepburn, Emory University
Committee Members	Patricia Griffiths, Emory University Carolyn Clevenger, Emory University Mi-Kyung Song, Emory University Bonnie Mowinski Jennings, Emory University

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