Effects of an educational intervention on health-related quality of life among family caregivers of people with dementia with a Turkish or Moroccan immigrant background: Insights from a cluster randomised controlled trial

Wezel, Nienke van; Blom, Marco M.; Spreeuwenberg, Peter; Devillé, W.L.J.M.; Francké, Anneke L.

doi:10.1016/j.pec.2020.10.029

Cited by 6 publications

(7 citation statements)

References 30 publications

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“…However, reasons also included lack of understanding of the purpose and possible gains, lack of trust and gender incongruency, which may be all related to cultural issues. However, the retention rate among those consenting to participate was comparable to those reported in most psychosocial dementia carer interventions ( Qiu et al, 2019 ), including interventions tailored to carers from minority ethnic groups ( Belle et al, 2006 ; Kally et al, 2014 ; van der Heide et al, 2020 ; Xiao et al, 2016 ). Although the study incorporated known facilitators of research participation, including building of trust and rapport, availability of interpreter services, and visit locations and timing that were convenient for participants ( Gilmore-Bykovskyi et al, 2019 ), the low participation rate suggests that recruitment strategies should be adjusted before commencing on a larger trial.…”

Section: Discussionmentioning

confidence: 70%

A personalized dementia care intervention for family carers from minority ethnic groups in Denmark: A pilot study

Nielsen

Waldemar

2021

Dementia

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Background There is a growing number of people with dementia in minority ethnic groups in Denmark. Support for the increasing number of family carers from minority ethnic groups is crucial, as caring for a relative with dementia may negatively affect the carer’s health and quality of life. The aim of this study was to determine the feasibility of a personalized intervention for family carers from minority ethnic groups. The intervention was a modified version of a culturally sensitive case-management program developed in Australia which had been shown to improve carers’ sense of competence in managing dementia and their mental well-being. Methods A small pilot trial was used to examine the feasibility and preliminary efficacy of the intervention. Feasibility indicators included data on recruitment, retention, adherence, and fidelity. Acceptability and suitability of the intervention was explored in post-intervention interviews with family carers, and baseline and follow-up scores for outcome measures were examined. Results Ten (30%) of 33 eligible family carers consented to participate in the study, but three were lost to follow-up and seven (70%) family carers completed the trial. Intervention fidelity, acceptance, and satisfaction were high. Results for outcome measures indicated that the intervention may improve family carers’ sense of competence by helping them cope better with challenges relating to caring and managing dementia and improved their satisfaction with primary care services. Conclusions The results suggest that the intervention is feasible and worth exploring for family carers of people with dementia from minority ethnic groups in Denmark.

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Section: Discussionmentioning

confidence: 70%

A personalized dementia care intervention for family carers from minority ethnic groups in Denmark: A pilot study

Nielsen

Waldemar

2021

Dementia

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“…However, the program may be improved by having sessions with smaller groups of peers, sharing the same cultural and language background, and offering follow‐up sessions. In line with the reports from an educational intervention among family carers of people with dementia with Turkish or Moroccan immigrant backgrounds, 14 multicultural link workers anticipated this could help build trust to better initiate discussions about private issues and address misconceptions and stigma.…”

Section: Discussionmentioning

confidence: 91%

“…Similar patterns have been demonstrated in other information programs for people from minority ethnic groups. 14 , 20 At the same time, mixing of genders in intimate discussions about health‐related issues may collide with established cultural norms, why it may be necessary to arrange separate program sessions for men. Alternatively, incorporating dementia information sessions in communal dining events could be a culturally appropriate format for mixing genders, an approach adopted other information campaigns targeting minority ethnic communities.…”

Section: Discussionmentioning

confidence: 99%

“…Internationally, strategies for reaching minority ethnic communities to increase knowledge and awareness about dementia include hosting health fairs or roadshows in urban areas with large minority ethnic populations, and delivering language and culture specific seminars, radio shows, television episodes, or YouTube series. 13 , 14 , 15 However, the most successful strategies have been those building on collaboration and partnership with key community stakeholders and principles of peer support. Thus, in the present study we developed a novel dementia information program in collaboration and partnership with participating municipalities that provides basic knowledge about dementia to middle‐aged and older people in minority ethnic communities and can be delivered in a community setting by non‐specialists.…”

Section: Introductionmentioning

confidence: 99%

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Feasibility of a culturally tailored dementia information program for minority ethnic communities in Denmark

Nielsen

Waldemar

2021

Int J Geriat Psychiatry

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Objectives: Proactive efforts that take language and cultural barriers into consideration may be needed to raise awareness of dementia and improve access to services in minority ethnic communities. The aim of this study was to assess the feasibility of a culturally tailored dementia information program and the immediate effects on participants' intention to seek help for memory problems, their knowledge and beliefs about dementia, and their knowledge about options for support.Methods: A novel dementia information program, consisting of one 2-h session, was developed through a collaborative research process with primary care dementia coordinators and multicultural link workers as co-researchers. It provides basic knowledge about dementia to minority ethnic communities and can be delivered in a community setting by non-specialists.Results: Six information program sessions were conducted with a total of 110 participants; 65 Turkish, 19 Pakistani, 20 Arabic-speaking, and 6 with another minority ethnic heritage. The program had a significant effect on participants' immediate knowledge and beliefs about dementia as measured with a quiz (z = −2.02, p = 0.04, d = 0.90). In a post-program focus group meeting, facilitating multicultural link workers reported satisfaction with facilitator training, adopted recruitment strategies, and content and delivery of the information sessions and provided feedback on improving the program. Conclusions:The results provide support for the feasibility of the culturally tailored dementia information program. The program has the potential to improve knowledge and beliefs about dementia and options for formal support in minority ethnic communities and seems easily implemented in existing services, and at a low cost.

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“…Interventions for other immigrant groups include: Our Family Journey for Vietnamese American caregivers, psychoeducational skill training for Chinese American caregivers, and Webnovela Mirela for Hispanic caregivers [ 55 ]. Education delivered within the community by a trusted source (e.g., a member of the community) has the potential to improve health-related quality of life and social well-being for family caregivers [ 59 ]. Research shows that culturally tailored interventions are more effective than generic health interventions for various disease contexts [ 58 , 60 , 61 ].…”

Section: Discussionmentioning

confidence: 99%

The Immigrant Memory Collaborative: A Community–University Partnership to Assess African Immigrant Families’ Experiences with Dementia

Nkimbeng

Rosebush

Akosah

et al. 2022

IJERPH

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Research suggests a disparity in the prevalence of dementia, with Black older adults having double the risk compared to their White counterparts. African immigrants are a fast-growing segment of the U.S. Black population, but the dementia care needs and resources of this population are not fully understood. In this paper, we describe the process of working collaboratively with a community partner and project advisory board to conduct a culturally informed project. Specifically, we describe the process of developing culturally informed instruments to collect data on dementia care needs and resources among African immigrants. Working together with a diverse project advisory board, a guide was developed and used to conduct community conversations about experiences with dementia/memory loss. Transcripts from six conversations with 24 total participants were transcribed and analyzed thematically by two independent coders in Nvivo. These qualitative findings were used to inform the development of a survey for quantitative data collection that is currently ongoing. Themes (e.g., cultural attitudes, challenges, and current resources) from the community conversations that informed the survey are described briefly. Despite the challenges of conducting research during a global pandemic, having trusting relationships with a partnering community organization and project advisory board facilitated the successful development of instruments to conduct preliminary dementia care research in an underserved population. We anticipate that survey results will inform interventions that increase education, outreach, and access to dementia care and caregiving resources for this population. It may serve as a model for community–university partnerships for similar public health efforts in dementia as well as other chronic disease contexts.

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Effects of an educational intervention on health-related quality of life among family caregivers of people with dementia with a Turkish or Moroccan immigrant background: Insights from a cluster randomised controlled trial

Cited by 6 publications

References 30 publications

A personalized dementia care intervention for family carers from minority ethnic groups in Denmark: A pilot study

A personalized dementia care intervention for family carers from minority ethnic groups in Denmark: A pilot study

Feasibility of a culturally tailored dementia information program for minority ethnic communities in Denmark

The Immigrant Memory Collaborative: A Community–University Partnership to Assess African Immigrant Families’ Experiences with Dementia

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