Association Between Caregiving-Related Factors and Exhaustion Among Informal Caregivers of a Loved One with Alzheimer’s Disease or a Related Dementia Público

Abstract

OBJECTIVE

Informal caregivers provide assistance without monetary compensation. Do people who take on

an informal caregiving role have high frequencies of adverse health outcomes? This study aimed to assess

whether caregiving-related factors were correlated with being exhausted at night.

METHODS

Utilizing the nationally representative 2017 National Study of Caregiving (NSOC) interviews,

data were analyzed for 506 informal caregivers. Being exhausted at night was the outcome of interest.

Caregiving-related factors were the number of hours per day spent in caregiving, financial difficulty

associated with the caregiving role, the physical difficulty associated with the role, and the relationship to

the care recipient. Socio-demographic factors of caregivers were included to assess whether any

additional factors were associated with feeling of exhaustion. I estimated descriptive statistics and six

ordinal logistic regressions. All analyses were adjusted using survey weights, to be able to generalize to

caregivers of Medicare beneficiaries with ADRD.

RESULTS

Among the caregiving related factors included caregiving hours per day, the perceived financial

difficulty, and perceived physical difficulty were significantly associated with caregiver’s being

exhausted at night. Once covariates were introduced, caregiving helping hours were no longer

significantly associated with being exhausted at night, although financial difficulty and physical difficulty

associated with the caregiving role remained significant. Further, caregivers who were emotionally

distressed and those who were women had a significantly higher likelihood of reporting being either

somewhat or very much exhausted at night.

CONCLUSIONS

More than half of ADRD caregivers report being exhausted at night. This research indicates that

there are differences in being exhausted at night related to components of the caregiving experience, such

as the number of caregiving hours per day, financial difficulty, and physical difficulty. These findings

indicate the need for resources and coping strategies to address the factors that contribute to caregiver

exhaustion.

Table of Contents

CHAPTER I: INTRODUCTION ........................................................................................................................................... 1

RESEARCH QUESTION .................................................................................................................................................................... 4

CHAPTER II: REVIEW OF RELEVANT LITERATURE .................................................................................................. 6

EPIDEMIOLOGY OF ADRD ............................................................................................................................................................. 6

Alzheimer’s Disease ................................................................................................................................................................ 6

Vascular Dementia .................................................................................................................................................................. 7

Lewy Body Dementia ............................................................................................................................................................... 7

Frontotemporal Dementia ....................................................................................................................................................... 8

INFORMAL CAREGIVER ROLE ......................................................................................................................................................... 8

Caregiver Demographics ........................................................................................................................................................ 9

Responsibilities of Caregiver .................................................................................................................................................. 9

Rewarding Role as Informal Caregiver ................................................................................................................................ 10

BURNOUT IN INFORMAL ADRD CAREGIVERS .............................................................................................................................. 11

Emotional Wellbeing ............................................................................................................................................................. 11

Sleep Patterns ........................................................................................................................................................................ 12

Demographic Differences in Caregiver Burden .................................................................................................................... 14

CHAPTER III: RESEARCH STUDY ................................................................................................................................. 17

DATA SECTION ............................................................................................................................................................................ 17

METHODOLOGY ........................................................................................................................................................................... 19

Procedures and Sample ......................................................................................................................................................... 19

MEASURES ................................................................................................................................................................................... 20

Outcome of Interest ............................................................................................................................................................... 20

Caregiving Related Factors .................................................................................................................................................. 20

Socio-demographic Factors of Caregivers & Emotional Distress ........................................................................................ 20

STATISTICAL ANALYSIS ............................................................................................................................................................... 22

RESULTS ...................................................................................................................................................................................... 22

Descriptive Analysis .............................................................................................................................................................. 23

Caregiving Related Factors & Being Exhausted at Night ..................................................................................................... 23

Caregiving Related Factors, Socio-demographic Factors, Emotional Distress and Exhausted at Night ............................. 25

Robustness of Ordinal Logistic Regression Test ................................................................................................................... 26

CHAPTER IV: DISCUSSION ............................................................................................................................................. 27

LIMITATIONS ............................................................................................................................................................................... 31

FUTURE DIRECTIONS .................................................................................................................................................................... 32

CONCLUSION ............................................................................................................................................................................... 33

CHAPTER V: PUBLIC HEALTH IMPLICATIONS ......................................................................................................... 35

REFERENCES .................................................................................................................................................................... 37

FIGURES AND TABLES .................................................................................................................................................... 49

FIGURE 1: REPRESENTATION OF CONCEPTUAL FRAMEWORK ........................................................................................................ 49

FIGURE 2: VALIDATING COMBINATION OF DEPRESSION VARIABLE AND ANXIETY VARIABLE TO NEW EMOTIONAL DISTRESS

VARIABLE .................................................................................................................................................................................... 50

FIGURE 3: FREQUENCY OF BEING ‘EXHAUSTED AT NIGHT’ RESPONSES IN CAREGIVERS, UNITED STATES (N=506) ................................................. 51

TABLE 1: DEMOGRAPHIC, PSYCHOLOGICAL, AND HEALTH ATTRIBUTES OF CAREGIVERS, UNITED STATES (N=506) ....................... 52

TABLE 2: RESULTS FROM SURVEY-ADJUSTED ORDINAL LOGISTIC REGRESSION, OF CAREGIVERS REPORTING HIGHER AGREEANCE

WITH BEING EXHAUSTED AT NIGHT BASED ON CAREGIVING RELATED FACTORS (N= 506) ............................................................... 53

TABLE 3: RESULTS FROM SURVEY-ADJUSTED ORDINAL LOGISTIC REGRESSION OF CAREGIVERS REPORTING HIGHER AGREEANCE

WITH BEING EXHAUSTED AT NIGHT BASED ON CAREGIVING RELATED FACTORS, SOCIO-DEMOGRAPHIC FACTORS, AND EMOTIONAL

DISTRESS OF CAREGIVERS (N= 506) .............................................................................................................................................. 54

APPENDIX: NATIONAL STUDY OF CAREGIVING (NSOC) INTERVIEW QUESTIONS OF INTEREST ................. 55

About this Master's Thesis

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• Permission granted by the author to include this thesis or dissertation in this repository. All rights reserved by the author. Please contact the author for information regarding the reproduction and use of this thesis or dissertation.

School	Rollins School of Public Health
Department	Hubert Department of Global Health
Degree	M.P.H.
Submission	Master's Thesis
Language	English
Research Field	Health Sciences, Public Health Health Sciences, Aging Health Sciences, General
Palavra-chave	ADRD Alzheimer's dementia caregiving caregivers
Committee Chair / Thesis Advisor	Solveig A Cunningham, Emory University
Committee Members	Linelle Blais, Emory University

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