Alzheimer Disease and Related Dementia Resources: Perspectives of African American and Caucasian Family Caregivers in Northwest Louisiana

Abstract

We examined knowledge of Alzheimer’s disease and related dementias (ADRD), resources, and research opportunities among older African American (AA) and Caucasian caregivers. A mixed methods design integrated qualitative (focus group) and quantitative (survey) data from Northwest Louisiana. Eight focus groups (59 adults, 92% female, 78% AA, 25% rural) revealed limited knowledge. Quantitative findings from 117 ADRD caregivers (83% female, 72% AA, 30% limited heath literacy, 27% low income) indicated participants obtained information from providers (54%), friends and relatives (32%), and the internet (37%). Barriers to care were cost (24%) and lack of family agreement (17%). Few families used adult daycare (8%) or support groups (28%). Concerns about research participation were violation of privacy (30%) and fear of patient distress (27%). Distrust of doctors was minimal (3%). Findings did not vary by race. There is a need for clear, literacy-appropriate information about ADRD, caregiver resources, and clinical trials.

Keywords

Alzheimer’s disease caregiver minority low income rural research participation

Introduction

The number of adults with Alzheimer’s disease and related dementias (ADRD) is expected to rise dramatically from 5.5 million (1 in 10 adults aged 65 and over) to an estimated 14 million people by 2050 (Alzheimer’s Association, 2019). The prevalence is significantly higher among African Americans compared with Caucasians (Mayeda et al., 2016). This dramatic increase represents a health care crisis in America (Alzheimer’s Association, 2019).

The majority of individuals with ADRD are cared for by family members (Kasper et al., 2015). For example, the Alzheimer’s Association (2019) reports that nationally, over 16 million adults provide unpaid care for people with ADRD and most are family members or friends (83%). This number is also expected to rise sharply as baby boomers age (Family Caregiver Alliance & National Center on Caregiving, 2015; U.S. Census Bureau, 2017). Recent estimates document that dementia caregiving is long term, with 35% of caregivers providing care for 2 to 4 years and an additional 35% providing care for 5 to 10 years (The National Academies of Sciences, Engineering, and Medicine, 2016).

Many caregivers face burdens such as negative health consequences. Those with low income, low health literacy, or who live in rural areas may also struggle to find and access community resources. In an internet survey of predominately White caregivers using the VA Caregiver Support Program, Bruening and colleagues (2020) found that caregivers valued the support, but many reported a lack of awareness of or difficulty successfully accessing the program. Other studies found that African American caregivers may have unique needs, as well as different patterns of health-seeking behavior compared with other groups (Samson et al., 2016). Thus, research is needed that includes more diverse ADRD family caregiver populations to help inform health care communication, delivery, and research.

To fill this gap, we conducted a study in rural and urban Northwest Louisiana using a mixed methods design assessing African American and Caucasian caregivers’ knowledge of dementia, use of caregiver resources and support, sources of ADRD information, barriers to care, and openness to research participation. The conceptual framework of this study is based on the Health Literate Care Model (Koh et al., 2013), which assumes all patients and family caregivers have information needs and are at risk of not understanding health condition(s) (Koh et al., 2013). Our goal was to identify barriers to resource access and use, as well as to develop health information recommendations for caregivers, clinicians, and researchers.

Method

This study was conducted from January to November 2017 in Northwest Louisiana. We used a mixed methods design. We conducted focus groups and structured telephone interviews of a convenience sample of healthy elderly and caregivers from local social, support and religious groups; findings helped inform survey development. Survey data were collected independently of focus groups and individual interviews and included exclusively ADRD caregivers.

Conceptual Framework

The conceptual framework of this study was based on the Health Literate Care Model which was designed to improve patient and family caregiver engagement in health care (Koh et al., 2013). Numerous studies have found that relatively few Americans are proficient in understanding and acting on available health information (Kutner et al., 2006; Nielsen-Bohlman et al., 2004; U.S. Department of Health & Human Services [U.S. DHHS], 2010). Health Systems and providers often function as if all patients and family caregivers can understand health information and navigate the health care system. The Health Literate Care Model assumes all patients and family caregivers have information needs, and are at risk of not understanding health condition(s) or how to make health care decisions about them (Koh et al., 2013).

Conducting Focus Groups and Interviews

Focus groups were conducted from January to June 2017 in urban and rural areas of Northwest Louisiana. The authors conducted eight focus groups of older adults and adults who reported experience caring for loved ones with dementia or Parkinson’s disease (PD). The Institutional Review Board (IRB) waived written informed consent. Two members of the research team, who were trained facilitators, explained the study, gave each participant a consent letter approved by the LSUHSC-S IRB and obtained verbal consent. In addition, we conducted seven individual interviews by phone with caregivers who were unable to attend a focus group. Participants were paid US$35 for their time.

Development of a Moderator’s Guide

The moderator’s guide was based on a review of the literature (Chin et al., 2011; Schulz & Sherwood, 2008; Sun et al., 2015) and discussions with physicians caring for ADRD and PD patients. The guide included open-ended questions about ADRD experience and knowledge of the disease, sources of health information and interactions with the health care system. Additional questions included demographic information and knowledge and experience with caregiver resources and clinical trials.

Participant Recruitment

Participants were recruited from two African American sororities, an African American church, a rural and two urban Council on Aging sites, a Volunteers of America Alzheimer’s Family Caregiver support group, and a Parkinson’s Caregiver support group. A director at each site assisted with recruitment of a convenience sample of participants by distributing flyers and announcing the focus groups at meetings. Directors scheduled focus groups at a convenient time for members at their site. No interested participants were excluded from the study. Most were family caregivers and all were over 50 years old. When necessary, individual phone interviews were conducted using the same moderator’s guide that was used for the focus groups.

Focus Group Procedure

Two of the authors, trained qualitative researchers, conducted the focus groups and individual interviews. One author and one research assistant took notes. Groups averaged 75 to 90 min in length, and telephone calls lasted 60 min; all were audio taped and followed the moderator’s guide and semistructured interview format.

Data Management and Analysis of Focus Groups

Notes from the focus groups and interviews were organized according to the semistructured interview format. Using qualitative methodology (MacPhail, Khoza, Abler, & Ranganathan, 2016; Ritchie, Lewis, Nicholls, & Ormston, 2013), the audio tapes were transcribed verbatim by one of the authors (C.A.). Two separate authors reviewed the transcripts to ensure the quality and accuracy of the transcriptions (E.D. and T.D.). A research assistant coded transcripts using NVivo software (QSR International Pty Ltd., 2012). Regular team discussions on the findings were conducted to resolve any conflicts and ensure consensus and methodological rigor. The constant comparative method of grounded theory was used to identify developing themes (Charmaz, 2014). Two authors (T.D. and C.A.) with qualitative analysis experience conduced a final validation review of the themes to ensure consistency. Four themes were identified: (a) experiences with ADRD, (b) sources of health information, (c) knowledge and use of caregiver support resources, and (d) awareness and acceptance of clinical trials. Quotes from participants were also included in the results. Findings were used to inform the development of the survey instrument.

Focus Group and Individual Interview Results

A total of 52 adults participated in the focus groups and an additional seven were interviewed by phone; ages ranged from 50 to 88, with the majority being African American (78%), female (92%). Twenty-five percent lived in rural areas.

ADRD Experience and Knowledge of the Disease

Most African American participants had a relative or friend with dementia. Most caregivers were caring for a parent; some for a sibling or spouse and a few for a friend, aunt, or more distant relative. Caregivers did not complain of stress even though a few had quit their jobs or moved to live with their loved one. Participants stated that it was their responsibility to care for their family member. As one caregiver said, “As African American women, it is our culture to take care of our mamas.” For end-stage disease, many family members described moving their loved one to a long-term care facility and accompanying the patient for hours or even days at a time to ensure adequate care. Most expressed a duty to care for their loved one, making statements like, “Mama was so good to me I wanted to take care of her.”

Participants’ knowledge primarily came from their observations and experience living with a family member who had ADRD. As one caregiver commented, “My husband would take the remote and think it would start the car.” Other participants reported observations like, “When the sun went down it got worse,” or recounted, “Mama had a car accident and couldn’t remember it.” Few had been given patient education about the disease or told of caregiver support resources. Participants, particularly in rural areas, were unfamiliar with classic signs of ADRD or disease progression; most seemed baffled by their loved ones changing behavior. Some urban African American participants had received general dementia information at an annual ADRD symposium conducted by an African American church or from their sorority whose national project was ADRD awareness. Many of these caregivers mentioned reading the 36-Hour Day: A Family Guide to Caring for People Who have Alzheimer’s disease, Related Dementias, and Memory Loss (Mace & Rabins, 1999).

Diagnosis and Medical Care

Participants reported identifying loved ones’ memory problems themselves, or hearing concerns from family, friends, or coworkers. For parents, caregivers reported becoming aware of memory issues from their siblings, other parent, parent’s coworkers, a primary care provider during a routine checkup or from authorities, such as the sheriff, following an incident (e.g., parent wandering off). For example, “My niece told me I needed to take my husband to the doctor, he would foul up dressing,” or “My husband’s work noticed it before I did, he messed up on numbers counting inventory.” No significant problems were reported for obtaining a diagnosis, but few participants sought specialty care. Most patients continued to receive medical care from their primary provider or the medical staff at a nursing home. For the Parkinson’s caregivers, a single provider emerged that was well known to provide excellent care. For dementia caregivers, no such specialist was identified, which is consistent with the lack of resources in the region. Participants described their reluctance to place their loved ones in a nursing home, only about half were pleased with the nursing care.

Sources of Health Information

Participants commonly got health information from TV and from pamphlets in doctors’ offices. Some obtained information in their sorority meetings, a few from relatives or friends who worked in nursing homes, and one woman got a flyer at her beauty shop. Few searched for information on the internet. No rural participant had looked on the internet for information. The most commonly reported barriers were lack of computer use, computer access, or awareness of available online resources. Rural pastors were not perceived as a credible source of ADRD information. “You never know how much education these preachers have, and different ones come in to preach each time.”

Knowledge of Resources

Few participants used Council on Aging home visit respite for caregivers or Volunteers of American day care, and most participants were not knowledgeable about ADRD resources in their community. A few urban African American participants had been to a support group sponsored by an African American church but most African American participants, particularly in rural areas, had never been to a support group and indicated they were not likely to attend one. “Support groups are new to black folks. We don’t talk about our private business to others.” The most commonly reported barriers to support group participation were (a) lack of knowledge that such a resource was available and (b) lack of resources to care for the patient during support group participation.

Openness to Participating in Clinical Research

No adult caregiver had ever been asked to be in an ADRD study or searched for clinical trials on the internet. “I’d rather find out about a study from the doctor.” The majority of caregivers said they were open to discussing research and possibly enrolling their loved one in a study but did not know how to get information about available trials. Some were leery about research: “I would have to be really informed and it would depend on what you have to do.” No participants mentioned the Tuskegee experiments or cited distrust of doctors or researchers as a barrier to participation.

Developing and Conducting the Survey

Development of Survey Instrument

To obtain quantitative data, the authors developed a survey based on themes identified in the focus groups (4) and review of the literature (Chin et al., 2011; Davis et al., 2017; Schulz & Sherwood, 2008; Sun et al., 2015). We identified six themes: (a) experiences with ADRD, (b) knowledge of ADRD, (c) diagnosis and medical care, (d) sources of health/ADRD information, (e) use of caregiver support/ resources, and (f) awareness and acceptance of clinical trials. These themes formed the framework of the 35-question instrument (see Supplemental File).

The survey, written on a sixth-grade reading level, was designed to be easy to read in accordance with the Health Literate Care Model (Koh et al., 2013; National Institute of Health [NIH], 2018). We assessed health literacy with the validated single-item Literacy Screener (Chew et al., 2008) that asked, “How confident are you in filling out medical forms by yourself?” It is scored on a 5-point Likert-type scale from “extremely,” “quite a bit” (adequate literacy) to “somewhat confident,” “a little confident” or “not at all” (scored as limited literacy).

Participant Recruitment and Survey Administration

Trained Research Assistants (RAs) approached participants at Council on Aging events, Health Fairs, AARP events, an ADRD conference at an African American church in Northwest Louisiana, and an adult education program at LSUHSC-S. No participants had been involved in the qualitative study. RAs asked participants if they were willing to complete a short survey that would help doctors improve health care for people with dementia. The Institutional Review Board (IRB) waived written informed consent. RAs explained the study and gave each participant a consent letter approved by the LSUHSC-S IRB and obtained verbal consent. Survey completion was contingent upon participants indicating that they had taken care of someone with ADRD (defined as “caregiver”). People who were not caregivers were instructed not to continue with the survey.

Surveys were individually handed to participants by one of a team of three to five investigators and RAs. Participants were asked to read each question and choose the answer or answers that best described their experience as a family caregiver of someone with ADRD. If family caregivers indicated that their loved one was deceased, the survey instructed them to answer the remaining questions as if they were currently caring for them. Each participant was offered individual assistance filling out the survey in accordance with the Health Literate Model (Koh et al., 2013). Assistance ranged from answering questions about survey items to presenting the survey orally, reading all questions and answer choices and circling the indicated response. The full survey took about 10 minutes to complete. All participants who agreed to participate were paid US$15 for their time.

Survey data analysis

Frequencies and percentages were calculated for all variables. Differences across racial groups were examined using chi-square tests for categorical variables, and analysis of variance was used to compare continuous data across groups.

Survey results

A total of 224 participants agreed to fill out the survey, and of these, 117 indicated they had taken care of someone with ADRD and were therefore eligible to complete the survey. Respondents ranged in age from 40 to 90 with a mean 62.6 years, were predominantly female (86%), African American (62%, 38% Caucasian), and reported that they were in good health (78%; Table 1). Most participants graduated from high school (96%) and 33% graduated from college. However, one in three (30%) self-reported possible limited health literacy. Only 29% indicated they had money left over at the end of the month and 27% reported they had none left over (an indicator of low income). There were no differences across racial groups for educational level, employment status, financial status, or literacy level.

Table 1.

Characteristics of Study Sample, Stratified by Race.

Characteristic	Total (n = 117)	White (n = 45)	Black (n = 72)	p value
Characteristic	n (%)	n (%)	n (%)	p value
Age, M (SD)	62.6 (13.3)	63.3 (12.4)	62.2 (13.9)	t(107) = 0.17, p = .68
Female	101 (86)	36 (80)	65 (90)	(1, N = 117) = 2.48, p = .12
Years of education
Less than high school	5 (4)	2 (4)	3 (4)	(3, N = 117) = 1.05, p = .79
High school grad	29 (25)	11 (24)	18 (26)
Some college	42 (37)	19 (42)	23 (33)
≥College graduate	38 (33)	13 (29)	25 (36)
Literacy level
Limited	31 (30)	13 (33)	18 (28)	(4, N = 117) = 1.27, p = .87
Adequate	73 (70)	27 (67)	46 (72)
Finances
Do not have money left over at end of month	31 (27)	9 (21)	22 (31)	(2, N = 117) = 3.02, p = .22
Have enough money to make ends meet	49 (43)	23 (54)	26 (37)
Have money left over at end of month	33 (29)	11 (26)	22 (31)
Access to a computer
Yes	87 (74)	35 (78)	52 (72)	(1, N = 117) = 0.45, p = .50
If yes, how comfortable using it
Extremely	34 (43)	12 (38)	22 (46)	(4, N = 80) = 1.02, p = .79
Quite	18 (23)	8 (25)	10 (21)
Somewhat	17 (21)	7 (22)	10 (21)
Slightly	7 (9)	4 (13)	3 (6)
Not at all	4 (5)	1 (3)	3 (6)
Access to a smart phone
Yes	72 (62)	31 (39)	41 (57)	(1, N = 117) = 1.67, p = .20
If yes, how comfortable using it
Extremely	31 (47)	15 (54)	16 (42)	(4, N = 117) = 5.09, p = .28
Quite	14 (21)	4 (14)	10 (26)
Somewhat	18 (27)	7 (25)	11 (29)
Slightly	2 (3)	2 (7)	0
Not at all	1 (2)	0	1 (3)

Most participants (64%) were a close relative of a patient with ADRD with 38% being an adult child (Table 2). Only 33% of the loved ones with ADRD were still living. Of these, 91% were living at home. Less than half (48%) of participants reported that the loved one had lived in assisted living. The majority (76%) of respondents had received assistance in caring for their loved one, though 92% had not used adult daycare services and only 28% had used support groups. These findings did not vary across racial groups.

Table 2.

Relationship, Care Provided and Support, Stratified by Race.

Characteristic	Total(n = 117)	White(n = 45)	Black(n = 72)	p value
Characteristic	n (%)	n (%)	n (%)	p value
Relationship to person cared for
Spouse/partner	10 (9)	6 (14)	4 (6)	(6, N = 117) = 9.64, p = .14
Daughter/son	43 (38)	18 (42)	25 (36)
Daughter or son-in-law	4 (4)	3 (7)	1 (1)
Grandson/granddaughter	11 (10)	5 (12)	6 (9)
Sibling	4 (4)	2 (5)	2 (3)
Other	41 (36)	9 (21)	32 (46)
Is loved one with Alzheimer’s:
Living	32 (33)	10 (27)	22 (37)	(1, N = 117) = 1.08, p = .30
Deceased	64 (67)	27 (73)	37 (63)
Current living accommodation of loved one:
Not in assisted living	56 (52)	20 (49)	36 (54)	(1, N = 117) = 0.25, p = .62
Assisted living	52 (48)	21 (51)	31 (46)
Do you live with your loved one?
Yes	32 (30)	10 (24)	22 (34)	(1, N = 117) = 1.18, p = .28
No	73 (70)	31 (76)	42 (66)
Are others involved in the care of your loved one?
Yes	83 (76)	30 (73)	53 (78)	(1, N = 117) = 0.32, p = .57
No	26 (24)	11 (27)	15 (22)
How much care do you provide?
Most	47 (42)	15 (36)	32 (46)	(2, N = 117) = 1/32, p = .52
Some	61 (55)	26 (62)	35 (51)
None	3 (3)	1 (2)	2 (3)
Does your loved one go to adult daycare?
Yes	9 (8)	2 (5)	7 (10)	(1, N = 117) = 1.02, p = .31
No	102 (92)	40 (95)	62 (90)
Have you ever been to an Alzheimer’s support group?
Yes	33 (28)	15 (33)	18 (25)	(1, N = 117) = 0.95, p = .33
If yes, how did you find out about it?
Doctors’ office	5 (4)	1 (2)	4 (6)	(1, N = 117) = 0.75, p = .39
Church	13 (11)	3 (7)	10 (14)	(1, N = 117) = 1.46, p = .23
Social Club	2 (2)	1 (2)	1 (1)	(1, N = 117) = 0.11, p = .74
Internet	4 (3)	2 (4)	2 (3)	(1, N = 117) = 0.22, p = .64
Newspaper	5 (4)	2 (4)	3 (4)	(1, N = 117) = 0.01, p = .94
Magazines	3 (3)	3 (7)	0	(1, N = 117) = 4.93, p = .03
American Association of Retired Persons	4 (3)	1 (2)	3 (4)	(1, N = 117) = 0.32, p = .57
Conference	5 (4)	3 (7)	2 (3)	(1, N = 117) = 1.02, p = .32
How helpful was the support group?
Very	20 (69)	7 (50)	13 (87)	(1, N = 117) = 4.55, p = .03
Somewhat	9 (31)	7 (50)	2 (13)
Not at all	0	0	0

ADRD Health Care Experience and Barriers to Care

Concerns that something was wrong with the patient were first raised during routine checkup with a primary care provider (41%), by a family member, friend, or coworker (35%) or by the family caregiver (32%). The majority of ADRD patients were receiving care from a family doctor or internist (79%); only approximately one in three (34%) were seeing a neurologist, psychiatrist, or geriatrician. Only half of responding caregivers (54%) received information about ADRD from their loved one’s doctor. When the loved one was diagnosed, 52% received face-to-face information from their physician, 27% were given written take home information, and 24% picked up a pamphlet in the doctor’s waiting room. Cost was the most common barrier to care (24%), followed by lack of family agreement about what to do (17%). Other barriers to care included transportation and distance, insurance, and patient cooperation. No differences were noted by race (Table 3).

Table 3.

Knowledge, Information and Care, Stratified by Race.

Characteristic	Total(n = 117)	White(n = 45)	Black(n = 72)	p value
Characteristic	n (%)	n (%)	n (%)	p value
What do you know about Alzheimer’s disease?
It causes memory loss	109 (93)	43 (96)	66 (92)	(1, N = 117) = 0.66, p = .42
It causes tremors (shaking)	27 (23)	12 (27)	15 (21)	(1, N = 117) = 0.53, p = .47
It is contagious	3 (3)	0	3 (4)	(1, N = 117) = 1.92, p = .17
It is common in older people	64 (55)	28 (62)	36 (50)	(1, N = 117) = 1.67, p = .20
It is treatable	34 (29)	10 (22)	24 (33)	(1, N = 117) = 1.66, p = .20
Your loved one was diagnosed by:
I noticed something wrong	37 (32)	13 (29)	24 (33)	(1, N = 117) = 0.25, p = .62
Family, friends, coworkers noticed something wrong	41 (35)	19 (42)	22 (31)	(1, N = 117) = 1.66, p = .20
Routine checkup with Primary care provider	48 (41)	18 (40)	30 (42)	(1, N = 117) = 0.03, p = .86
Other	9 (8)	4 (9)	5 (7)	(1, N = 117) = 0.147, p = .70
What kind of doctor is your loved one seeing?
Family doctor	75 (64)	26 (58)	49 (68)	(1, N = 117) = 1.26, p = .26
Internist	18 (15)	11 (24)	7 (10)	(1, N = 117) = 4.61, p = .03
Neurologist	28 (24)	14 (31)	14 (19)	(1, N = 117) = 2.07, p = .15
Psychiatrist	5 (4)	1 (2)	4 (6)	(1, N = 117) = 0.75, p = .39
Geriatrician	5 (6)	3 (7)	3 (4)	(1, N = 117) = 0.36, p = .55
I don’t know	8 (17)	5 (11)	3 (4)	(1, N = 117) = 3.31, p = .15
Other	8 (7)	1 (2)	7 (10)	(1, N = 117) = 2.44, p = .12
Have any of the following made it difficult to get care for your loved one?
Cost	28 (24)	10 (22)	18 (25)	0.73
Distance	12 (10)	7 (16)	5 (7)	(1, N = 117) = 2.23, p = .14
Transportation	14 (12)	8 (18)	6 (8)	(1, N = 117) = 2.34, p = .13
Unsure of loved one’s needs	13 (11)	6 (13)	-	(1, N = 117) = 0.37, p = .55
Insurance	8 (7)	2 (4)	6 (8)	(1, N = 117) = 0.66, p = .42
Family agreement about what to do	20 (17)	7 (16)	13 (18)	(1, N = 117) = 0.12, p = .73
Loved one refused to go to doctor	13 (11)	7 (16)	6 (8)	(1, N = 117) = 1.46, p = .23
Other	9 (8)	3 (7)	6 (8)	(1, N = 117) = 0.1, p = .74
When your loved one was diagnosed, what kind of information did the doctor give you?
Pamphlet in the waiting room	28 (24)	10 (22)	18 (25)	(1, N = 117) = 0.12, p = .73
Take home information	32 (27)	11 (24)	21 (29)	(1, N = 117) = 0.31, p = .58
Face-to-face	61 (52)	26 (58)	35 (49)	(1, N = 117) = 0.93, p = .33
Information about community resources	8 (7)	3 (7)	5 (7)	(1, N = 117) = 0.00, p = .95
Link to website	3 (3)	0	3 (4)	(1, N = 117) = 1.92, p = .17
Information about support group	9 (8)	7 (16)	2 (3)	(1, N = 117) = 6.37, p = .01
I am not involved in doctor visits	12 (10)	5 (11)	7(10)	(1, N = 117) = 0.06, p = .81
Where have you gotten information about Alzheimer’s disease?
Doctor	63 (54)	29 (64)	34 (47)	(1, N = 117) = 3.31, p = .07
TV	32 (27)	7 (16)	25 (35)	(1, N = 117) = 5.12, p = .02
Friends/relatives	37 (32)	13 (29)	24 (33)	(1, N = 117) = 0.25, p = .62
Magazines in doctors’ offices	29 (25)	8 (18)	21 (29)	(1, N = 117) = 1.93, p = .17
Books	36 (31)	18 (40)	18 (25)	(1, N = 117) = 2.93, p = .09
Internet	43 (37)	20 (44)	23 (32)	(1, N = 117) = 1.86, p = .17
Online group	5 (4)	1 (2)	4 (6)	(1, N = 117) = 0.75, p = .39
Support group	1 (1)	1 (2)	0	(1, N = 117) = 2.44, p = .30
Church	9 (8)	2 (4)	7 (10)	(1, N = 117) = 1.09, p = .30
Health fairs	35 (30)	16 (36)	19 (26)	(1, N = 117) = 1.11, p = .29
Other	11 (9)	3 (7)	8 (11)	(1, N = 117) = 0.64, p = .42
What are your thoughts or concerns about your loved one participating in an Alzheimer’s research study?
Privacy	35 (30)	11 (24)	24 (33)	(1, N = 117) = 1.04, p = .31
Fear that it would distress my loved one	32 (27)	12 (27)	20 (28)	(1, N = 117) = 0.02, p = .90
Convenience	13 (11)	6 (13)	7 (10)	(1, N = 117) = 0.37, p = .55
Do not trust the doctor	3 (3)	1 (2)	2 (3)	(1, N = 117) = 0.03, p = .85
Might benefit me	20 (17)	8 (18)	12 (17)	(1, N = 117) = 0.02, p = .88
Might help others with Alzheimer’s	38 (33)	16 (36)	22 (31)	(1, N = 117) = 0.32, p = .57
Payment	12 (10)	5 (11)	7 (10)	(1, N = 117) = 0.81, p = .81
Expenses	15 (13)	8 (18)	7 (10)	(1, N = 117) = 1.61, p = .21

Knowledge of ADRD

Knowledge of ADRD did not differ by race. In general, participants knew it caused memory loss (93%) and was common in older people (55%). However, many had inaccurate information: 29% believed it was treatable, 23% thought it caused tremors, and 3% indicated that they believed it was contagious.

Sources of ADRD and Caregiver Support Information

Approximately one in three caregivers (31%) received information about ADRD from books, 30% from health fairs, 37% from the internet, and 25% from magazines in the doctor’s office (Table 3). Less than one in five (18%) reported receiving information about available community resources, websites, or support groups. Findings were similar across race. However, African American participants were more likely to obtain ADRD information from TV than White participants (35% vs. 16%; p = .02).

The majority of participants had access to a computer (74%) and a smart phone (62%), although about a third (35% and 32%, respectively) indicated that they were not comfortable using the technology. Only 37% of participants used the internet to obtain information about ADRD. No differences were noted by race.

Openness to Research Participation

Openness to research participation was moderate, with 17% of participants indicating that research participation might benefit them and 33% indicating that it might help others with dementia. The biggest concerns about research participation were violation of privacy (30%) and fear of distressing the patient (27%). Convenience (11%), expenses (13%), and payment (10%) were also concerns. These did not differ by race. Interestingly, distrust of the doctor performing the research was minimal for both White (2%) and Black (3%) participants.

Discussion

The majority of participants had received limited information about ADRD or caregiver resources and general knowledge of ADRD was incomplete. Barriers to care were similar across racial groups and included cost, lack of family agreement about what to do, and transportation. While most patients with ADRD were followed by a family physician or internist, only about one in three participants saw a specialist. Only half of caregivers received information about ADRD from their loved one’s doctor, and knowledge and use of community resources was minimal. The main barrier to a loved one participating in a clinical trial was concerns about privacy; the main facilitator was that it might help others. Our results show no differences by race in basic knowledge about ADRD, where and how to find resources and information about the disease or attitudes about research participation.

Specific Knowledge of ADRD

The lack of differences across racial groups for knowledge of ADRD is not in accordance with previous studies, which reported that African Americans have different beliefs or knowledge about the risk factors and causes of ADRD (Roberts et al., 2003). For example, Dilworth-Anderson and colleagues (2012) found that being older and African American were significantly associated with having incorrect beliefs about the causes and symptoms of ADRD as compared with Caucasian elders. Connell and colleagues (2007) reported that African American and Hispanic participants were more likely than Caucasians to believe that development of dementia occurred with normal aging. These researchers suggested that limited knowledge of normal aging may be linked to why these groups delayed seeking treatment.

The discrepancy in racial differences may be related to health literacy. Health literacy, defined by the Institute of Medicine as “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions” (Nielsen-Bohlman et al., 2004), did not vary by race. Health systems and providers often function as if all adults can understand health information and navigate the health care system. However, according to the only National Survey of Health Literacy, only 12% of adults have proficient health literacy skills (Kutner et al., 2006). We found that one in three African American and Caucasian participants reported low health literacy.

Barriers to Care

Cost was the most common barrier to care. Caregivers reported moving in with their loved one to accommodate the patient’s needs, and some caregivers had quit their jobs to provide care. Other barriers included lack of agreement within the family as to how to care for their loved one, transportation and distance to care facilities, insurance, and patient cooperation. We found that none of these barriers differed by race. Previous studies found similar barriers to care including perceived lack of need or reluctance (Brodaty et al., 2005), caregiver burden such as family conflicts (Etters et al., 2008), lack of manpower and financial resources (Herron et al., 2016), limited communication between doctor and patient (Bradford et al., 2009), and misconceptions about dementia (Hinton et al., 2005). Shame and social rejection add to caregivers’ burden (Burgener & Buckwalter, 2018), and this burden may delay seeking treatment. Our findings regarding low levels of specialty care are similar to findings by Strohmaier and colleagues (2018) who reported that approximately one in four individuals with dementia saw a neurologist or psychiatrist. Lack of specialty care may be associated with lack of access and availability, as noted by focus group participants.

Sources of information about ADRD

Our data suggest that effective information about ADRD and caregiver resources is a significant issue in our community. While information was most commonly received from the doctor, only about half of respondents received personal discussion. This barrier may exist in other communities as well. According to the Department of Health, nearly 9 of 10 American adults have difficulty using health information that is routinely available in health care facilities and the media (U.S. DHHS, 2010). Many African American participants in our study got information about ADRD from TV, but it can be difficult for patients and caregivers to separate evidence-based information from misleading advertisements (NIH, 2018).

Our findings are similar to previous studies which report limited doctor–patient communication about dementia (Bradford et al., 2009; Cornett & Hall, 2008; Keightley & Mitchell, 2004). Previous studies show that many primary care physicians lacked expertise or formal guidance as to how to communicate a dementia diagnosis to the patient (Bradford et al., 2009; Keightley & Mitchell, 2004). Bradford and colleagues (2009) found that difficulties in delivering the diagnosis might be due to language barriers, self-perception of inadequate communication skills, and lack of knowledge about how to deliver information as well as administer proper screening and assessment tools. The professional experience of the primary care provider also influences the type of support caregivers and patients receive (Gaugler et al., 2016).

Community Resources

Our finding of widespread lack of knowledge and underutilization of available caregiver resources is consistent with previous research. While support groups are generally beneficial for caregivers and patients and can alleviate stress and depressive symptoms (Chien et al., 2011; Leung et al., 2015), there is some debate about their effectiveness (Schoenmakers et al., 2010). Tailoring delivery of support based on cultural and contextual factors may improve outcomes (Cagle & Wells, 2017; Gonyea et al., 2016; Hansen et al., 2020).

Research Participation

Participants were open to clinical trials, but few had been asked to participate or knew how to find information about trials in their area. Research concerns included loss of privacy and distress to patients. However, distrust of the loved one’s doctor was minimal and similar across racial groups. This finding is counter to literature which reported a significant break in trust between African Americans and medical professionals when the “Tuskegee” experiment was made public (Fitzgerald, 2016). Recent research with low income, predominately African American adults found participants had high interest in medical research, particularly studies that might benefit them or their families, but they had never been asked and most had not searched for clinical trials on the internet (Davis et al., 2019). Participants in this study and others (Friedman et al., 2015) said they were more likely to participate in a clinical trial if their physician recommended it. These studies concluded that trust in one’s own provider may be a potential mediating factor in alleviating mistrust of medical research.

Limitations

There are limitations to this study. First, we do not know how many participants were caring for people with Alzheimer’s disease as opposed to other types of dementia. We asked specifically about AD in the survey, but it is likely that caregivers of people with other forms of dementia were also included. We also included a small sample of caregivers of people with Parkinson’s disease, which was less than 5% of the sample. Thus, our results are not specific to dementia resulting from Alzheimer’s disease. Second, we developed a new survey instrument based on our focus group findings and the literature that has not been validated or correlated with existing measures, so results should be interpreted with caution. Third, the study was conducted in one state, and for the focus groups we purposely oversampled African American adults, seeking community organizations such as African American sororities and churches. The focus groups were conducted with a convenience sample of individuals participating in ADRD or PD support, social and faith-based groups who may tend to be more active in the community. Thus, our findings, especially for the focus groups, may not generalize to the broader population. Fourth, the study could be expanded to include more men; however, women tend to be the primary caregivers. Finally, our study did not assess stress level of caregivers, knowledge of disease progression, caregivers’ cognitive ability, or barriers to internet use.

Conclusions and Recommendations

With the prevalence of ADRD increasing, clear information about the disease, caregiver resources, and available clinical trials needs to be easily accessible and understandable. Ideally, written and face-to-face information would be given by informed and trusted health care providers. Given the volume of ADRD care being administered by primary care providers, providing ADRD resources for primary care providers may be an efficient and effective way to reach a large volume of patients and caregivers. Additional studies are needed to identify feasible strategies for referrals to appropriate accessible specialist. Use of TV may be effective for raising awareness of available services such as support groups, respite care, and adult day care. However, additional barriers to the use of support services could be addressed in future research.

Supplemental Material

FINAL_Alzheimers_Survey_8.10.17 – Supplemental material for Alzheimer Disease and Related Dementia Resources: Perspectives of African American and Caucasian Family Caregivers in Northwest Louisiana

Supplemental material, FINAL_Alzheimers_Survey_8.10.17 for Alzheimer Disease and Related Dementia Resources: Perspectives of African American and Caucasian Family Caregivers in Northwest Louisiana by Elizabeth A. Disbrow, Connie L. Arnold, Nathaniel Glassy, Collette M. Tilly, Kate M. Langdon, Deniz Gungor and Terry C. Davis in Journal of Applied Gerontology

Footnotes

Authors’ Note

This study was approved by the institutional review board of Louisiana State University Health Sciences Center, Shreveport (LSUHSC-S): 00000713.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding was provided by the LSU Health Shreveport Intramural Grant-in-Aid Program.

ORCID iD

Nathaniel Glassy

Supplemental Material

Supplemental material for this article is available online.

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