Toward a Family-Sensitive Practice in Dementia

Gonçalves‐Pereira, Manuel

doi:10.1007/978-3-319-39138-0_16

Cited by 7 publications

(9 citation statements)

References 67 publications

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“…Besides possibly easing the burden of primary caregivers and delaying institutionalization (Gaugler et al, 2003), in principle all caregivers should be offered tailored interventions that account for unique combinations of needs (Zarit, Femia, Kim, & Whitlatch, 2010). Planning family interventions in dementia must accommodate an understanding of the system context (Gonçalves-Pereira, 2017).…”

Section: Discussionmentioning

confidence: 99%

“…Moreover, they are subject to the same multifactorial bio–psycho–social determinants that frame the risk for anxiety, depression, and other adverse experiences. Yet whereas there are considerable sources of information and services that target primary caregivers, secondary caregivers may receive little guidance for themselves or how they might best assist the primary caregiver (Gonçalves-Pereira, 2017). Likewise, little is known about positive experiences (e.g., personal growth, finding purpose, gaining mastery and satisfaction) beyond the primary caregiver, which could be important for keeping secondary caregivers engaged and as the focus for benefit-finding interventions (Cheng et al, 2017).…”

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confidence: 99%

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A comparison of primary and secondary caregivers of persons with dementia.

Gonçalves-Pereira

Zarit

Cardoso

et al. 2020

Psychology and Aging

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Having 2 or more relatives involved in the informal care of people with dementia is frequent worldwide. There are, however, few comparisons of primary and secondary caregivers and even fewer of those who are caring for the same person. Our study aimed to contrast these 2 experiences of caregiving. We compared 2 related samples of 61 primary and 61 secondary family caregivers of the same persons with dementia in a nonrandomized cross-sectional study. Caregivers’ main outcome assessments were the Zarit Burden Interview (for subjective burden), the General Health Questionnaire (for psychological distress), and the Positive Aspects of Caregiving scale. We controlled for caregiver variables (e.g., demographics, caregiving arrangements, social support, sense of coherence) and the neuropsychiatric symptoms of dementia. Subjective burden was higher in primary than secondary caregivers (p = .013), but positive aspects of caregiving did not differ (p = .150). Psychological distress was high at clinically relevant levels in primary and secondary caregivers, without statistically significant differences between groups (p = .456). The findings demonstrate that notwithstanding the difficulties faced by primary caregivers, secondary caregivers may also experience clinically significant distress. Therefore, their needs for assistance and support should be addressed more systematically. These findings call for systemic family-focused interventions in dementia that address the support each person provides or might provide, as well as the psychological distress each person may feel.

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Section: Discussionmentioning

confidence: 99%

mentioning

confidence: 99%

A comparison of primary and secondary caregivers of persons with dementia.

Gonçalves-Pereira

Zarit

Cardoso

et al. 2020

Psychology and Aging

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“…Furthermore, in well-functioning families, AD care crises are mostly manageable with interventions focused on caregiving issues. However, as claimed by Gonçalves-Pereira (2017), if AD impacts family dynamics for a significant length of time, challenging the family system’s resilience, caregiver-oriented approaches may not be enough. By targeting family dynamics, family interventions would be directed to improve relationships and interactions between family members across different generations and, in this way, foster a greater family support network for the person with AD.…”

Section: Discussionmentioning

confidence: 99%

“…Consequently, living with AD is increasingly recognized as being a family affair (Esandi & Canga, 2014; Garwick et al, 1994; Gonçalves-Pereira, 2017; Keady & Harris, 2009; Peisah, 2006), with significant impacts on individual and family functioning both practically and emotionally (Mitrani et al, 2006; Rolland, 2017). Within this context, families strive to balance the demands of providing the best care for their relative while maintaining the personal, social, and working life of the family (Quinn et al, 2015).…”

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confidence: 99%

“…Building on these insights, recent research exploring the experience of AD has increasingly considered its impact on family relationships (Ablitt et al, 2009; Hellström et al, 2007; Keady, 1999; Keady & Nolan, 2003; La Fontaine & Oyebode, 2014; Quinn et al, 2015). However, to date, the majority of this research has been dyadic in focus, predominantly exploring spousal relationships and has rarely extended its gaze to the wider family and how support can best be provided to the family system (Gonçalves-Pereira, 2017; Keady & Harris, 2009; Woods et al, 2019). Not surprisingly, professional support has been focused quite narrowly on the person with AD and their primary carer, with most attention being given to the instrumental aspects of care (Esandi & Canga, 2014; Nolan et al, 2008), and the wider emotional and relational needs of the family being given scant attention.…”

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Family Dynamics and the Alzheimer’s Disease Experience

et al. 2021

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Using constructivist grounded theory, this study explored how family groups respond to Alzheimer’s disease in its early stages. Seven family units ( N = 22) participated in a series of 26 longitudinal interviews and 14 other family caregivers took part in three focus groups at a later stage for refinement and verification of the findings. Data analysis revealed four types of family dynamics: close dynamics at the start that were maintained throughout the experience, close dynamics at the start which became conflicting, conflicting dynamics at the start which remained problematic, and conflicting dynamic at the start which became closer over time. Factors such as prior relationships and family history, motivation to care, family organization, communication, and the family vision for future shaped the development of these dynamics. This theory of family dynamics in Alzheimer’s disease has the potential to inform the development of more adequate early interventions for families living with the illness.

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