Caregivers' Perceptions of an Early Diagnosis of Alzheimer's Disease in African Americans

241 Pages·2016·1.65 MB·English

Walden University
ScholarWorks
Walden Dissertations and Doctoral Studies
Walden Dissertations and Doctoral Studies
Collection
2016
Caregivers' Perceptions of an Early Diagnosis of
Alzheimer's Disease in African Americans
Stanita Jackson
Walden University
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Walden University

College of Health Sciences

This is to certify that the doctoral dissertation by

Stanita Jackson

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. JaMuir Robinson, Committee Chairperson, Public Health Faculty
Dr. Eboni Green, Committee Member, Public Health Faculty
Dr. Raymond Thron, University Reviewer, Public Health Faculty

Chief Academic Officer
Eric Riedel, Ph.D.

Walden University
2016
Abstract
Caregivers’ Perceptions of an Early Diagnosis of Alzheimer’s Disease in African
Americans
by
Stanita Jackson

MS, Delta State University, 2007
BS, Delta State University, 2005

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

Walden University
May 2016
Abstract
Alzheimer’s disease (AD) is significantly more prevalent among African Americans than
within the general population, but rates of early detection are lower in the African
American community. Researchers have demonstrated that both pessimistic Alzheimer’s-
directed health beliefs, and negative perceptions of the effectiveness and the accessibility
of medical care act as barriers to care seeking by African American family members of
individuals with the disease. Recent research into causal judgments made by potential
caregivers about individuals with undiagnosed AD suggests that gender bias and errors in
attribution may constitute covert barriers to both lay and professional interpretations
regarding the need for cognitive assessment. This study used grounded theory to
investigate whether African American family caregivers hold integrated, gender-distinct
beliefs about causal attributions of their family member’s cognitive decline which may
contribute to a delay in care-seeking behaviors. The health belief model was used in
conjunction with the attribution theory as the conceptual framework for understanding
the data. Purposive sampling of geriatric and memory clinics, and a church was used to
recruit eight family caregivers who participated in in-depth interviews. The results
indicated that there is a significant lack of caregivers’ knowledge and understanding of
AD regardless of gender, and that this lack is linked to delays in diagnosis. These results
may be used to support the development of a new theory of family caregivers’ knowledge
and understanding of AD. The social change implications include decreasing delayed
diagnosis through increased educational awareness, community outreach programs, and
universal mandatory cognitive testing of AD for at-risk individuals.
Caregivers’ Perceptions of an Early Diagnosis of Alzheimer’s Disease in African
Americans
by
Stanita Jackson

MS, Delta State University, 2007
BS, Delta State University, 2005

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

Walden University
May 2016
Dedication
This dissertation is dedicated to my beloved grandmother Minnie L. Harris who
was diagnosed with Dementia in 2005 and made her heavenly entrance in 2013. She has
always been my role model and hero because she experienced so many health issues and
challenges in her life and God always kept her safe in his hands. With my grandmother
diagnosis, I noticed a disease that changed the person I have known for 30 years of my
life at that time and transformed her into someone who was very vulnerable and unable to
live alone and maintain her independence. After battling with this chronic illness for 8
years, she still stood strong at 82 years of age without an intense progression as some
individuals have experienced. She still possessed her charismatic personality, yet
sometimes was unable to remember things that just happened. I am thankful that she still
recognized her children and grandchildren and was able to communicate with us on a
regular basis. On July 6, 2013 my granny went on to continue her life in heaven and she
no longer has to suffer from Alzheimer’s disease or any other chronic illness. I miss her
so much and will always love her. She always told me the importance of education.
Since this research will not directly impact my grandmother’s life, hopefully it
will help others to come that are susceptible to developing Alzheimer’s disease. I love
you grandmother. Also, I would like to dedicate this research study to my grandfather
Theodore Dowdy who passed away in 1997 from prostate cancer, he is now my angel in
the sky and I know he is very proud of his granddaughter. He will always hold a special
place in my heart. I love you both forever and always.
Acknowledgments
First, I would like to thank God who is my savior and the reason that I have been
able to fulfill this dream. He has given me the desires of my heart to complete such a task
that will not only be a great accomplishment for myself but will allow me to help others.
Secondly, I would like to thank my mother who has always inspired and
encouraged me to be the best that I can be and to never give up and always trust God to
see me through any challenging situation. She is my rock and support throughout my
entire educational journey. To my grandparents, I love and miss each of you dearly and I
thank you all for always loving and supporting me in all my endeavors. To Dr. Robinson,
thank you for being my heaven sent angel to see me through to the end of this journey. I
thank Dr. Green for serving on my committee and assisting me throughout this journey
too. Thanks to Dr. Thron and the research team for their valuable feedback and support. I
truly express thanks to every mentor that inspired my interest in science and my previous
chair Dr. Mary for assisting me with portions of my dissertation. I would like to thank my
participants for their time and information that built this study. Thanks to my partner Eric
for always supporting me and giving advice countless times during this process. I thank
my brother, family, and friends that have supported me through words, advice, laughter,
and prayer. I am very grateful for all of your time, commitment, love, and diligence. I
have obtained a lot of knowledge and experiences throughout this time that will continue
to direct me into more awesome endeavors. Once again thank you all very much. I
sincerely love you all.
Table of Contents
List of Tables ..................................................................................................................... vi
List of Figures ................................................................................................................... vii
Chapter 1: Introduction to the Study ....................................................................................1
Introduction ....................................................................................................................1
Background ....................................................................................................................2
Problem Statement .........................................................................................................3
Purpose of the study .......................................................................................................8
Research Questions ........................................................................................................9
Theoretical Framework ................................................................................................10
Health Belief Model (HBM) and Attribution Theory ........................................... 10
Nature of the Study ......................................................................................................12
Definitions....................................................................................................................13
Assumptions .................................................................................................................14
Scope and Delimitations ..............................................................................................14
Limitations ...................................................................................................................15
Significance of the Study .............................................................................................15
Summary ......................................................................................................................17
Chapter 2: Literature Review .............................................................................................18
Introduction ..................................................................................................................18
Literature Search Strategy............................................................................................18
Conceptual Framework ................................................................................................19
i
Attribution Theory ................................................................................................ 19
Dominant Attribution Theories ............................................................................. 20
Applied Research of Attribution Theory .....................................................................37
Theoretical Foundation ................................................................................................42
Health Belief Model (HBM) ................................................................................. 42
Subsequent Additions to the Model ...................................................................... 46
Frameworks and Summary ..........................................................................................52
Rationale for Using the HBM ......................................................................................56
Rationale for Using HBM in Conjunction with Attribution Theories .........................57
Key Literature ..............................................................................................................59
Clinical Manifestations of Alzheimer’s Disease..........................................................59
Epidemiologic Information on Alzheimer’s Disease ...................................................69
Prevalence and Incidence of Alzheimer’s Disease ............................................... 69
Prevalence of Alzheimer’s Disease by Race ........................................................ 71
Prevalence of Alzheimer’s Disease by Gender ..................................................... 72
Risks factors of Alzheimer’s Disease ................................................................... 72
Risks factors by Race ............................................................................................ 73
Mortality and Morbidity of Alzheimer’s Disease ................................................. 73
Healthcare Burden of Alzheimer’s Disease .......................................................... 74
Delayed Diagnosis of Alzheimer’s Disease .................................................................75
General Information on Delayed Diagnosis ................................................................75
Delayed Diagnosis by Race .........................................................................................76
ii
Delayed Diagnosis by Race and Gender ......................................................................78
Contribution of the Family Caregiver to Delayed Diagnosis ......................................78
Contribution of Primary Health Care Provider to Delayed Diagnosis ........................82
Summary ......................................................................................................................84
Chapter 3: Research Method ..............................................................................................86
Introduction ..................................................................................................................86
Research Design and Rationale ...................................................................................87
Role of the Researcher .................................................................................................90
Methodology ................................................................................................................91
Participant Selection Logic ................................................................................... 91
Sample…............................................................................................................... 92
Instrumentation ............................................................................................................93
Semi-Structured Interview .................................................................................... 93
Procedures for Recruitment .........................................................................................93
Data Collection and Analysis.......................................................................................95
Data Collection ..................................................................................................... 95
Data Analysis ........................................................................................................ 96
Issues of Trustworthiness .............................................................................................97
Ethical Procedures .......................................................................................................99
Summary ....................................................................................................................100
Chapter 4: Results ............................................................................................................102
Introduction ................................................................................................................102
iii