The Meanings Caregivers Ascribe to Dementia-Related Changes in Care Recipients: A Meta-Ethnography

Lindauer, Allison; Harvath, Theresa A.

doi:10.3928/19404921-20141121-01

Cited by 15 publications

(10 citation statements)

References 47 publications

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“…The strategies presented by these African-American caregivers provide valuable insight into the complex interplay between the caregiver and the person with dementia, as symptoms of dementia appear and reappear, fundamentally altering long-established patterns in the relationship. The perplexing and distressing nature of the changes shared by participants in this study echo the findings of previous studies (Evans & Lee, 2014; Large & Slinger, 2015; Lindauer & Harvath, 2015). Taken together, these studies suggest that as the person with dementia becomes increasingly impaired, caregivers experience profound grief and a struggle to redefine and reintegrate their shifting reality.…”

Section: Discussionsupporting

confidence: 87%

African-American caregivers’ perspectives on aggressive behaviors in dementia

2018

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Purpose Although African-American dementia caregivers report less upset and more confidence managing aggressive behaviors when compared to whites, their contextual experience remains unclear and this study explores that context. Methods Semi-structured interviews with 13 African-American family caregivers were analyzed using content analysis. Results Two themes emerged, "It's the disease…not the person" and "You got to pick your battles." "It's the disease…not the person," reframing aggressive behavior, included three sub-themes. Sometimes the person with dementia seemed like a stranger but caregivers remembered "In there somewhere is that person." Aggressive behavior made this perspective difficult as they reported, "Sometimes it's hard not to take it personal." Premorbid dyadic conflict made caregiving difficult but caregivers remembered they were "Not who they were then." "You got to pick your battles," reflecting cognitive and behavioral strategies, also included three sub-themes. Participants prioritized caregiving over other commitments by reminding themselves "I got to do what I gotta do." Preventing aggressive behaviors was most successful when "We didn't argue…we didn't insist" and caregivers remembered "Don't put her in a position to fail" when involving the person with dementia in activities. Implications African-American caregivers described substantial challenges when confronted by aggressive behaviors. Strategies employed by caregivers enabled them to maintain a caring perspective and the person with dementia to maintain calm. Interventions that help caregivers manage aggressive behaviors may benefit by considering the challenges, cultural values, and effective strategies used by African-Americans.

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Section: Discussionsupporting

confidence: 87%

African-American caregivers’ perspectives on aggressive behaviors in dementia

2018

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“…Qualitative research has suggested that these various appraisals and reactions to change are closely interlinked (Boylstein & Hayes, 2012;Chesla et al, 1994;Hayes et al, 2009;Kaplan, 2001;Lindauer & Harvath, 2015;Walters et al, 2010). For example, perceiving that the person with dementia is no longer the person one married could understandably undermine the feelings of love and intimacy, and both might, in turn, contribute to a sense that the relationship has been transformed into a non-marital relationship between a care-giver and a care-receiver.…”

Section: Relationship Continuity As a Framework For Linking And Measumentioning

confidence: 99%

Relationship continuity and emotional well-being in spouses of people with dementia

Riley

Evans²,

Oyebode

2016

Aging & Mental Health

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“…Caring for one of the world’s 47 million adults with Alzheimer disease or a related dementia can be both rewarding and taxing for family members [1,2]. For some, caregiving can have detrimental effects on their mental health, leading to depression and a sense of burden [3].…”

Section: Introductionmentioning

confidence: 99%

Using Technology to Facilitate Fidelity Assessments: The Tele-STAR Caregiver Intervention

et al. 2019

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Background Families living with Alzheimer disease and related dementias have more access to support thanks to the development of effective telehealth-based programs. However, as technological science grows, so does the risk that these technology-based interventions will diverge from foundational protocols, diluting their efficacy. Strategies that ensure programs are delivered as intended, with fidelity to guiding protocols, are needed across the intervention spectrum—from development to wide-scale implementation. Few papers address fidelity in their technology-based work. Here, we present our translated telehealth intervention, Tele-STAR, with our fidelity findings. Objective This study aimed to assess the preliminary efficacy of Tele-STAR on reducing family caregiver burden and depression. Across the implementation phases, we assessed the fidelity of a caregiver education intervention, STAR-C, as it was translated into a telehealth option (Tele-STAR). Methods A total of 13 family caregivers consented to participate in an 8-week, videoconference-based intervention (Tele-STAR). Tele-STAR efficacy in reducing the affective burden of caregiving was assessed using pre- and postintervention paired t tests. Content experts assessed program fidelity by reviewing and rating Tele-STAR materials for adherence to the original STAR-C protocol. These experts assessed treatment fidelity by viewing videos of the intervention and rating adherence on a checklist. Results Tele-STAR reduced caregiver burden and retained good program and treatment fidelity to STAR-C. Conclusions We found Tele-STAR reduced caregiver burden and had good fidelity to the original protocol. Assessing fidelity is a complex process that requires incorporation of these procedures early in the research process. The technology used in this study facilitated the accrual of informative data about the fidelity of our translated intervention, Tele-STAR.

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The Meanings Caregivers Ascribe to Dementia-Related Changes in Care Recipients: A Meta-Ethnography

Cited by 15 publications

References 47 publications

African-American caregivers’ perspectives on aggressive behaviors in dementia

African-American caregivers’ perspectives on aggressive behaviors in dementia

Relationship continuity and emotional well-being in spouses of people with dementia

Using Technology to Facilitate Fidelity Assessments: The Tele-STAR Caregiver Intervention

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