Dementia care-sharing and migration: An intersectional exploration of family carers' experiences

Ahmad, Menal; Broeke, Jennifer van den; Saharso, Sawitri; Tonkens, Evelien

doi:10.1016/j.jaging.2021.100996

Cited by 8 publications

(6 citation statements)

References 30 publications

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“…Research in facilitators and barriers for the everyday life of people with dementia can be enriched by other perspectives alongside the first-person perspective, namely their next of kin and professionals. Further research ideally could be performed from an intersectional perspective that explores the intersections of various social categories such as culture, social economic circumstances, rural or urban living and sexual orientation [ 142 ]. At the same time, in order to implement social innovations, an assessment of the so-called Societal Readiness Level is needed [ 143 ].…”

Section: Discussionmentioning

confidence: 99%

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

Huizenga

Scheffelaar

Fruijtier

et al. 2022

IJERPH

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Increasing attention has been paid to the ‘voice’ of people living with mild cognitive impairment (MCI) or dementia, but there is a lack of clarity about how everyday life is perceived from this insider’s perspective. This study aimed to explore the everyday life experiences, challenges and facilitators of individuals with MCI and dementia living at home. A scoping review of qualitative studies, guided by the Joanna Briggs Institute Reviewers Manual, was conducted. Eight databases were searched, resulting in 6345 records, of which 58 papers published between 2011 and 2021 were included. Analysis was carried out by descriptive content analysis. Findings were categorized into seven spheres of everyday life: experiences related to the condition, self, relationships, activities, environment, health and social care and public opinions. The results show many disruptions and losses in everyday life and how people try to accommodate these changes. In all areas of everyday life, people show a deep desire to have reciprocal relationships, stay engaged through participation in activities and have a sense of belonging in the community. However, more research is needed on the factors that promote and impede the sense of reciprocity and belonging.

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Section: Discussionmentioning

confidence: 99%

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

Huizenga

Scheffelaar

Fruijtier

et al. 2022

IJERPH

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“…Next, we used our second dataset to better understand the research findings from the practitioners with whom we spoke. We had already analysed the second dataset in two previous papers (Ahmad et al, 2020(Ahmad et al, , 2022. Our comparison with the first dataset was based on the data that were already coded for these papers, as well as the complete raw dataset of all family carers included in our larger research project.…”

Section: Discussionmentioning

confidence: 99%

“…The changing social and demographic landscape of Europe leads to more diverse family contexts and care needs (Roberto and Blieszner, 2015). At the same time, within families with a migration background, care experiences and needs for caresharing are multilayered (Ahmad et al, 2022). This calls for an approach that fosters dementia care-sharing in a way that is sensitive to these different needs and experiences.…”

Section: Discussionmentioning

confidence: 99%

“…In doing so, this framing rule excludes families who have not yet been fully informed about dementia and the possibilities for care guidance. Previous studies (Jutlla, 2015;Ahmad et al, 2022) illustrate that (formal and informal) care-sharing is less likely for PwM who come from an under-resourced background, as compared to PwM who had the opportunities and financial means for self-development. Our findings thus suggest that the framing rule of a demand-oriented approach particularly excludes under-resourced family carers.…”

Section: Discussionmentioning

confidence: 99%

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Framing dementia care in families with a migration background: an analysis of practitioners' and family carers' views and experiences

2023

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Little is known regarding the ways in which practitioners' views and approaches impact support for persons with a migration background (PwM) caring for individuals with dementia. This paper responds to this knowledge gap by identifying how practitioners frame dementia care in families with a migration background, and how these frames can be understood in light of the experiences of PwM caring for a family member with dementia. A total of 41 participants were included: ten practitioners (i.e. health and social care workers) and 31 PwM caring for a family member with dementia. All participants were part of a qualitative research project on dementia care in Dutch families with a migration background. Practitioners' expressed frames were identified through Hochschild's interpretive framework of ‘framing and feeling rules’. Thereafter, practitioners' identified frames were related to the care experiences of PwM caring for a family member with dementia. Findings indicate that practitioners operate within an approach that does not sufficiently take into account the uniqueness of each family carer. This leads to frictions within the practitioner–client relationship. We thus highlight the need for discussions about the tenability of practitioners' views and approaches in an increasingly globalised and diverse society.

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“…However, given the variations in reasons for immigration, cultural, ethnic and socioeconomic status, education and length of stay, minority ethnic groups are diverse and heterogeneous (Debesay et al, 2019). Consequently, studies argue that overemphasising ethnicity and culture might simplify the understanding of care practices among families from minority ethnic backgrounds (Ahmad et al, 2022; Baghirathan et al, 2020; Sagbakken et al, 2020).…”

Section: Introductionmentioning

confidence: 99%

Different senses of one’s place: Exploring social adjustment to home-based care services among family caregivers from minority ethnic backgrounds who have relatives living with dementia

et al. 2023

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Western dementia care policies emphasise that family caregivers from minority ethnic backgrounds must become more engaged in healthcare services. However, research exploring experiences of receiving services such as home-based care, and thus adjustment to the service, among family caregivers from minority ethnic backgrounds who have relatives with dementia is still scarce. Therefore, inspired by Pierre Bourdieu’s theoretical concepts of field, habitus and capital, we explored how family caregivers from different minority ethnic backgrounds justified decisions about whether to receive home-based care and their social adjustment to the service. Using empirical data from semi-structured interviews with nine family caregivers from different minority ethnic backgrounds, we demonstrated that different mindsets and available social resources gave rise to various actions. Although some family caregivers were optimistic about receiving home-based care, our findings point to tensions between the ideals of care practices and the organisational structures surrounding home-based care as a service. Among those who had experiences with home-based care, we found that organisational limitations, particularly in terms of efficiency demands and time constraints, influenced their behaviours and thus their social adjustments to the service. For some, these limitations eventually resulted in cancellation of the service. However, not all had the same opportunities to make these decisions, indicating that, although family caregivers from minority ethnic backgrounds receive home-based care, this does not necessarily entail a deficiency-free service. Furthermore, we argue that public discourses on this subject can be challenged by encouraging one to look beyond ethnic and cultural labels towards other factors, such as organisational structures, that might largely influence the use of home-based care among these family caregivers.

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Dementia care-sharing and migration: An intersectional exploration of family carers' experiences

Cited by 8 publications

References 30 publications

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

Everyday Experiences of People Living with Mild Cognitive Impairment or Dementia: A Scoping Review

Framing dementia care in families with a migration background: an analysis of practitioners' and family carers' views and experiences

Different senses of one’s place: Exploring social adjustment to home-based care services among family caregivers from minority ethnic backgrounds who have relatives living with dementia

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