Improving the Experiences of Informal and Formal Alzheimer's

191 Pages·2017·0.94 MB·English

Walden University
ScholarWorks
Walden Dissertations and Doctoral Studies
Walden Dissertations and Doctoral Studies
Collection
2015
Improving the Experiences of Informal and Formal
Alzheimer's Disease and Dementias Caregivers
Roxroy Anthony Reid
Walden University
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Walden University

College of Social and Behavioral Sciences

This is to certify that the doctoral dissertation by

Roxroy Reid

has been found to be complete and satisfactory in all respects,
and that any and all revisions required by
the review committee have been made.

Review Committee
Dr. Linda Day, Committee Chairperson,
Public Policy and Administration Faculty

Dr. Raj Singh, Committee Member,
Public Policy and Administration Faculty

Dr. Mark DeVirgilio, University Reviewer,
Public Policy and Administration Faculty

Chief Academic Officer
Eric Riedel, Ph.D.

Walden University
2015
Abstract
Improving the Experiences of Informal and Formal Alzheimer’s Disease and Dementias
Caregivers
by
Roxroy A. Reid

MSW, Arizona State University 2006
BSW, Arizona State University 2005

Dissertation Submitted in Partial Fulfillment
of the Requirements for the Degree of
Doctor of Philosophy
Public Policy Administration

Walden University
June 2015
Abstract
Informal and formal caregivers of persons with Alzheimer’s disease and related
dementias (ADRD) encounter a more difficult and unique set of challenges than do
caregivers of individuals with general disabilities. If adequate caregiver supports are not
provided, caregivers may experience increased strain as the disease progresses, increasing
the likelihood of unnecessary institutionalization of their care recipients and increasing
the cost to the public. Using rational choice theory and political systems theory, the
purpose of this study was to differentiate between the phenomenological experiences of
formal and informal caregivers of ADRD patients. The overall research was a qualitative
design that used semi-structured interviews to collect data from 5 formal and 5 informal
caregivers who were recommended by the local Alzheimer’s association chapter. Data
were analyzed using direct content analysis of recurrent themes including how
policymakers might respond to needs for respite, support, and more resources. Research
findings suggested more education is needed about the disease and how best to give care
for both formal and informal ADRD caregivers. Furthermore, distinctions between
formal caregivers and informal family caregivers and their care recipients were identified,
and these details should be noted by policymakers. Informal ADRD caregivers would
benefit more from the research findings. Particular benefits would include financial
supports, additional funding for caregiver respites, more education, and better care
methods for ADRD care recipients. These recipients are rapidly growing in numbers and
pose unique 21st century socioeconomic challenges to informal caregivers.
Improving the Experiences of Informal and Formal Alzheimer’s Disease and Dementias
Caregivers
by
Roxroy A. Reid

MSW, Arizona State University 2006
BSW, Arizona State University 2005

Dissertation Submitted in Partial Fulfillment
of the Requirements for the Degree of
Doctor of Philosophy
Public Policy Administration

Walden University
June 2015
Dedication
This work is dedicated to my dear mother, Dorothy Vernon, who worked formally
and informally with ADRD patients as a nurse’s aide for 38 years and who taught me
how to have compassion for caregivers and care recipients. I love you mom! I also
dedicate this dissertation to the family and formal caregivers who continue to labor for
their care recipients with minimal supports, training, and respite. May the findings of this
study, and others like it, lead to better support for you on your caregiving journey.
Acknowledgments
I am completing this dissertation with five “Fs”: Faith, Family, Friends, and
Faculty. As it relates to faith, while I acknowledge the construct of a supreme
intelligence, I equally acknowledge the gifts that I have inherited to enable me to get
through this process. Gifts such as perseverance in the face of many large life issues truly
came from a divine source.
Family includes all those significant others who have been there on the sidelines
cheering me on when I questioned, “What was I thinking?” You all know who you are if
you are reading this. I especially acknowledge the love of my life who fed, nurtured, and
loved me unconditionally through the latter stages of this process. And if all that love and
care wasn’t enough, she read and pointed out my grammatical errors in this paper.
Thanks for all your partnership Jeanne Marie! You are truly a gift to me from The
Creator.
Special thanks to friends and colleagues from my place of employ and the greater
New Mexico ADRD community; this study would not have been possible without your
contribution. Thanks to my good friend and colleague, Professor Emeritus Jordan
Kosberg, who continually encouraged me to stay the course, Geriatrician Dr. Carla
Herman, whose dedication to serving and caring for our seniors and their caregivers at
the micro and macro levels was a constant source of inspiration. To Dr. John Robertson
who was one of the initial sparks of inspiration to go for the doctorate and who gave me a
perpetual push to “finish it.” In addition, my MSW graduate interns who kept me on my
academic toes throughout this process. Thank you all for your and unyielding support.
Most of all, I give special thanks and acknowledgement to the formal and informal
caregiver participants, who told their stories and gave of their time, despite their arduous
caregiving schedules. Your hearts are pure gold.
Finally, I give special acknowledgement and appreciation to the faculty at Walden
University who did their jobs well. To Dr. Linda Day my chair for her dedication,
advocacy, and rapid turnaround time with submittals. I appreciated you when I selected
you as chair and I will appreciate you always. Thanks you! Special thanks to my
committee member Dr. Raj Singh who always had a comforting and encouraging word of
support and to the URR Dr. DeVirgilio for countless hours of frustrating review and for
pushing me to produce my best work.
Table of Contents
List of Tables .................................................................................................................... vii
List of Figures .................................................................................................................. viii
Chapter 1: Introduction to the Study ....................................................................................1
Introduction ....................................................................................................................1
Background ....................................................................................................................2
Problem Statement .........................................................................................................3
Purpose of the Study ......................................................................................................4
Research Questions ........................................................................................................5
Conceptual Framework ..................................................................................................5
Nature of the Study ........................................................................................................8
Definitions......................................................................................................................9
Assumptions .................................................................................................................14
Scope, Delimitations, and Limitations .........................................................................14
Scope 14
Delimitations ......................................................................................................... 15
Limitations ............................................................................................................ 15
Significance of Study ...................................................................................................16
Summary ......................................................................................................................17
Chapter 2: Literature Review .............................................................................................18
Introduction ..................................................................................................................18
Literature Search Strategy............................................................................................20
i
Conceptual Framework ................................................................................................21
Rational Choice Theory ........................................................................................ 21
Studies Employing Rational Choice Theory......................................................... 23
Political Systems Theory ...................................................................................... 24
Studies Employing Political Systems Theory ....................................................... 28
Phenomenology............................................................................................................29
Informal and Formal Alzheimer’s Disease and Dementia Caregivers ........................30
The Economics of Caregiving: The Societal Current and Future Cost .......................38
Informal Family Caregiver Costs.......................................................................... 39
Formal Caregiver Pay and Benefits ...................................................................... 40
Money Dedicated to Other Diseases ..................................................................... 41
Federal and State Government Response to Alzheimer’s Disease and
Dementia ..........................................................................................................43
Understanding the Policymaking Process and its Application ....................................45
Experience of Informal and Formal Family Caregivers ..............................................47
Informal Caregiver Experience ............................................................................. 47
Formal Caregivers ................................................................................................. 48
What Policymakers Need to Know to Support Caregivers ..........................................50
Translating Caregiver Support Needs into Public Policy Actions ...............................53
Research Methods Found in the Literature ..................................................................55
Summary ......................................................................................................................57
Chapter 3: Research Method ..............................................................................................60
ii