Factors Associated with Unmet Needs among African-American Dementia Care Providers

Abstract

Racial and ethnic minorities currently comprise 20% of the U.S. population; in 2050, this figure is expected to rise to 42%. As a result, Alzheimer’s disease (AD), the 5th leading cause of death for people aged 65 and older, is likely to increase in these groups. Most dementia caregiving for these populations comes from family and friends, especially among families with lower socioeconomic status. A convenience sample of 30 African-American dementia caregivers was interviewed to determine unmet needs. Participants expressed a limited desire for formal services, such as support groups, legal advice, case management, and homemaker services. Instead, commonly expressed needs were daytime respite care and especially a desire for family and social support. Many caregivers expressed a need for other family members to share responsibility in the process; therefore, methods for caregiver support that address multiple family members in care provision may be beneficial for this group.

Utilizing the Senior Companion Program as a platform for a culturally informed caregiver intervention: Results from a mixed methods pilot study

“…These results corroborate previous studies that have tested the efficacy of psychoeducational interventions for ADRD caregivers. Previous research suggests that psychoeducational interventions in particular have been shown to positively affect ADRD caregiver stress (Mart ın-Carrasco et al, 2009), improve mental health (O'Rourke et al, 2010), and lessen caregivers' bother of memory related behavioral problems (Desin et al, 2016). Furthermore, study findings are consistent with previous research suggesting that home-based interventions may improve caregiver well-being (Gitlin, Winter, Dennis, Hodgson, & Hauck, 2010).…”

“…Finally, study results also showed that received social support of caregivers significantly increased after the SCP Plus. This is a key finding as many African American ADRD caregivers express a desire for family and social support (Desin et al, 2016) and wish for broader sharing of caregiving responsibility within families (Samson et al, 2016).…”

“…skill building and knowledge building) intervention strategies have been designed and tested to address the adverse outcomes of ADRD family caregiving. In particular, these interventions have been shown to positively impact caregiver stress, quality of life, and perceived health (Mart� ın-Carrasco et al, 2009), decrease depression and anxiety (O'Rourke et al, 2010), reduce caregiver burden (Martin-Carrasco et al, 2009) and lessen caregivers' bother of memory related behavioral problems (Desin, Caban-Holt, Abner, Van Eldik, & Schmitt, 2016).…”

“…In particular, there is limited research related to the development and evaluation of rigorous socioculturally informed interventions for African American or other diverse ADRD caregiver populations (Na´poles, Chadiha, Eversley, & Moreno-John, 2010). Also, several extent programs developed for African American caregivers lack affordability, accessibility, and sustainability, all of which are especially important as research suggests that African American caregivers are more likely to be economically disadvantaged, have less education, and more likely unemployed than their White family caregiver counterparts (Desin et al, 2016;Rosenthal Gelman, Sokoloff, Graziani, Arias, & Peralta, 2014). Finally, almost all previous interventions are based on intervention protocols that have used professionals instead of lay persons or peers.…”

Attitudes toward advance care planning among persons with dementia and their caregivers

“…Educational programs could be targeted to caregivers, family members (Desin et al, 2016), and individuals in early disease stages, alike, and primarily focus on the clinical course of dementia and issues related to end-of-life care, including health care decision-making and treatment options. To date, evidence for the efficacy of interventions to increase participation in care planning among persons with dementia is limited (Bryant et al, 2018), although discussions related to goals of care may be associated with an increased acceptance of dementia diagnosis among health care proxies (Givens et al, 2018).…”