African American caregivers

Abstract

Despite the significance of an early diagnosis of Alzheimer's disease (AD), African Americans are diagnosed in later stages of the disease and present with greater cognitive impairment at the time of diagnosis when compared to Euro-Americans. To this end, there exists a paucity of research on diagnostic pathways among African Americans with dementia. More specifically, few studies have explored help-seeking pathways from the initial manifestation of symptoms until an actual diagnosis of Alzheimer's disease was received from the perspective of African American caregivers. Thus, the present study examined the retrospective experiences of 17 African American caregivers who were given a diagnosis of Alzheimer's disease for a family member with dementia. Participants completed face-to-face semi-structured interviews. Study findings revealed a complex interplay between the patient with dementia, entities that comprise their social support network, and clinicians. Keywords African American caregivers; Alzheimer's disease; dementia; help-seeking behavior d e m e n t i a http://dem.sagepub.com vol 8(1) 95-116

Persistent barriers and facilitators to seeking help for a dementia diagnosis: a systematic review of 30 years of the perspectives of carers and people with dementia

“…Full demographic characteristics of participants were not reported in all studies, but most carers were female and either spouses or adult children. Eleven studies sought the perspectives of specific ethnic groups: two Hispanic and Latino communities within the United States of America (USA) (Neary and Mahoney, 2005;Ortiz and Fitten, 2000), four African American communities (Clark et al, 2005;Cloutterbuck and Mahoney, 2003;Hughes et al, 2009;Jackson, 2016), three Chinese communities in the USA (Zhan, 2004), Canada (Koehn et al, 2012), and China (Yan et al, 2017), one of South Asian Canadians (McCleary et al, 2012), and one UK study which purposively sampled South Asian, Black African or Caribbean, Asian, White, and Chinese carers (Mukadam et al, 2011a). Study quality was variable and the results of the appraisal can be found in Table 4.…”

Race and Personal Exposure to AD Influence Projected Memory Failure Attributions and Help-Seeking Behaviors

“…However, relatively few studies have investigated memory failure attribution and help-seeking behaviors in this group. By investigating projected help-seeking behaviors and memory failure attribution in a pre-morbid sample including a large African American group, the present study begins to address this gap in the literature and shed light on some of the mechanisms at play in the consistent discrepancies observed between African Americans and non-Hispanic Whites when it comes to stage of diagnosis and timely treatment (Cloutterbuck & Mahoney, 2003;Hughes et al, 2009). The fact that personal exposure to AD is more salient to African Americans when considering the causes of their own memory failures highlights the great value these individuals place on personal experience and family ties.…”

“…For example, Cloutterbuck and Mahoney (2003) noted that the caregivers of African Americans with dementia deemed their interactions as generally negative, as providers often "dismissed" and "devalued" their expressed concerns. Similarly, Hughes, Tyler, Danner, and Carter (2009) found that family caregivers of African American patients frequently felt that their concerns surrounding memory loss were overlooked, as physicians instead focused their assessments on other chronic disorders that prominently affect the African American community, as opposed to carrying out memory assessments. In turn, Hughes et al (2009) suggest that this could play a role in the initial misdiagnoses of African American patients.…”

“…Similarly, Hughes, Tyler, Danner, and Carter (2009) found that family caregivers of African American patients frequently felt that their concerns surrounding memory loss were overlooked, as physicians instead focused their assessments on other chronic disorders that prominently affect the African American community, as opposed to carrying out memory assessments. In turn, Hughes et al (2009) suggest that this could play a role in the initial misdiagnoses of African American patients. Overall, these biases and negative encounters within the healthcare system subsequently lead many African Americans to turn to informal social support networks and spirituality for assistance (Cloutterbuck & Mahoney, 2003).…”

Addressing Risk Factors for Neurocognitive Decline and Alzheimer’s Disease Among African Americans in the Era of Health Disparities

“…Moreover, African-Americans have a higher rate of vascular disease such as T2DM, a condition thought to increase brain dysfunction in higher cortical abilities. Despite the significance of an early diagnosis of Alzheimer's disease (AD), African Americans are diagnosed in later stages of the disease, demonstrate greater cognitive impairment at the time of diagnosis, and receive less adequate treatment following diagnosis (Hughes, Tyler et al 2009;Chin, Negash et al 2011). As the major public health emphasis for African Americans remains focused around physical disease (e.g., heart disease, lower limb amputations, and kidney disease), there is growing concern that health care professional and the patients for whom they provide care may be missing opportunities for connecting integrative mind-body health.…”