Black and White Adult Family Members' Attitudes Toward a Dementia Diagnosis (original) (raw)
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Differences Between African Americans and Whites in Their Perceptions of Alzheimer Disease
Alzheimer Disease & Associated Disorders, 2003
To design optimal health services and education programs for Alzheimer disease (AD), it is important to understand cultural differences in perceptions of the disorder. In this study, we investigated differences between African Americans and whites in their beliefs, knowledge, and information sources regarding AD. We distributed a written questionnaire through lay and professional organizations and meetings in the southeastern United States, yielding a sample of 452 adults (61% white, 39% African American; 78% female; mean age 47 years; 33% with family history of AD). The questionnaire assessed the following: (1) illness beliefs, (2) factual knowledge, (3) sources of information, and (4) perceived subjective threat of AD. African Americans and whites were generally similar in their beliefs about common symptoms, prominent risk factors, and the effectiveness of treatments for AD (although whites expressed greater certainty in these beliefs than African Americans). In comparison to whites, African Americans showed less awareness of facts about AD, reported fewer sources of information, and indicated less perceived threat of the disorder. These preliminary findings suggest important distinctions between African Americans and whites in their knowledge about, and conceptualization of, AD. Follow-up studies with more representative samples and more fully validated measures will be necessary to confirm these differences. Health psychologic research suggests that such differences in illness perceptions could shape response to disease burden, assessment and diagnosis, and available health care options.
Journal of Applied Gerontology, 2020
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, caregive...
Attitudes of Family Members and Caregivers Regarding Alzheimer’s Disease Pre-Symptomatic Screening
Journal of Alzheimer's disease reports, 2024
Background: In recent years, studies have examined the acceptability and attitudes that influence the intention to early screen for Alzheimer's disease (AD) in the general population, older people, carers, and asymptomatic individuals who report a family history of AD. However, it remains unclear what specific factors promote or reduce the acceptability of pre-symptomatic screening. Objective: The aim of this study is to explore the attitudes of family and non-family members as well as caregivers and non-caregivers toward the pre-symptomatic screening of AD. Methods: A total of 213 participants completed the Perceptions regarding pRE-symptomatic Alzheimer's Disease Screening (PRE-ADS) Questionnaire. Group comparisons using t-test and one-way ANOVA were used to examine differences in attitudes toward pre-symptomatic screening regarding age, family history, knowing someone with AD, influence of depression, and feelings of anxiety. The subscale "Acceptability of Screening" was developed to investigate the willingness to undergo pre-symptomatic screening. Results: Participants with a family history showed greater acceptance of pre-symptomatic screening while both caregivers and non-caregivers had similar attitudes. People with a family history as well as those with personal connections to dementia indicate a greater need for knowledge. The findings suggest that younger adults appear to perceive less harm from testing, whereas those who experience higher levels of anxiety and depression seem to perceive more testing harms.
2006
Caregivers of the elderly who suffers from AD and dementia have significantly high psychological stress. Alzheimer's disease (AD) is a progressive degenerative disease that affects cognition, the ability to perform activities of daily living, and behavior. AD is the most common form of dementia, a group of disorders that impair mental functioning. Memory loss is one of the earliest symptoms of AD, along with a gradual decline of cognitive functions. Age is a key risk factor for AD in all racial and ethnic groups. Recent research has shown that the prevalence of AD in the African American community has graduated from a problem to an epidemic. Much of the burden of caring for patients with AD falls on family members, particularly spouses and adult children, predominantly female. Because there is a lack of knowledge and awareness in the African American community about the disease, the progression of the disease, signs and symptoms, and resources available, many caregivers caring for individuals with AD and/or dementia suffer with physical illnesses and heightened levels of stress. This study examines the relationship between the level of knowledge and the level of psychological stress among African American primary caregivers of patients who have Alzheimer's disease and/or dementia. A sample size of 50 caregivers was obtained by convenience sampling. A cross-sectional design was employed in this study. Caregivers were asked to fill out a quiz and questionnaire regarding their knowledge and feelings about caring for a person with Alzheimer's disease and/or dementia as well as some personal information about themselves. Results of the study showed that increased knowledge about dementia was associated with higher levels of stress. Overall, there was a poor level of knowledge about dementia in African American caregivers. Caregiver stress was associated with relationship to the care recipient, showing that "others" were more stressed than spouses who took care of the elderly with dementia. Caregivers' lack of knowledge about the spiraling course of the disease may put them at risk for a multitude of psychological and physical health problems. Nurses can take an active role in educating the caregivers and public about the disease and providing access to available resources. Because African Americans demonstrated low levels of knowledge about dementia viii in this study, efforts should focus on identifying the barriers to knowledge and their means of gaining information about dementia.
Ethnic Differences in Perceptions of Alzheimer’s Disease
Californian Journal of Health Promotion
Purpose: To examine ethnic differences in ratings of 1) condition severity, 2) need for medical assistance, and 3) likelihood of hiring a Healthcare Advocate (HCA) for an ill, elderly parent as a function of 1) parent’s cognitive state (Alzheimer’s disease [AD] or cognitively healthy), 2) parent’s physical malady (hip fracture or heart attack), and 3) distance (near or far from the parent), with an emphasis on the interaction between ethnicity and cognitive state. Method: Nine-hundred-seventy-four individuals who identified as White, Black, Hispanic, or Asian/Pacific Islander read a hypothetical vignette about an older man. The man’s physical malady (heart attack or hip fracture), cognitive state (AD or no AD), and physical distance from a close family member were manipulated in the vignette. Participants rated the severity of the medical condition and their likelihood of hiring an HCA. Results: Black and Asian/Pacific Islander participants did not differ from White participants on ...
Alzheimer’s/Dementia among African-Americans in the United States
Tij S Research Journal of Social Science Management Rjssm, 2013
Many clinicians believe that among all the existing diseases, dementia is the most troubling, confusing, and distressing to clients. The truth is that dementia seems to remove the totality of a client's being, or snatch human vitality from a client. Dementia is a disease that has the potential to have negative impacts on the clients and their loved ones until death. Dementia poses a number of practical challenges; in which caretaker can no longer be sure whether the care delivered is satisfactory to the client. to achieve better treatment outcomes, as well as satisfaction with care received, This is an exploratory study that examines all existing literatures and provides challenges of dementia among African-Americans and concludes that it is necessary that clinicians and care providers take into consideration the individual with dementia's experiences, and include this in their planning for care.