Persons With a Migration Background Caring for a Family Member With Dementia: Challenges to Shared Care

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

doi:10.1093/geront/gnz161

Cited by 24 publications

(59 citation statements)

References 19 publications

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“…So it is likely that they were not recruited in adequate numbers. Studies have shown that caregivers with a migration background generally have only limited access to sources of advice and information as well as medical support, so that this group is presumably underrepresented in the present study [ 55 ].…”

Section: Discussionmentioning

confidence: 99%

Support, needs and expectations of family caregivers regarding general practitioners – results from an online survey

Wangler

Jansky

2021

BMC Fam Pract

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Background Family caregivers are often the first line of support for people requiring care; although they may personally stand to benefit, these activities substantially increase the risk of physical and emotional stress. General practitioners (GPs) may provide important support and stabilisation, but need to adjust to the needs and expectations of this group in order to do so. The aim of the study was to compare the needs of family caregivers from GPs to the support they actually experience. Additional aims included determining the main factors affecting satisfaction amongst family caregivers with support from GPs. The results were used to develop possible approaches towards optimisation within the purview of general medical practice. Methods Between January and July 2020, 612 people supporting or caring for a family member responded to an online survey posted in seventeen internet forums focused on family caregivers. In addition to the descriptive analysis, a t-test with independent samples was used to identify significant differences between two groups. We also used binary logistic regression analysis to identify indications of potentially influential factors regarding the experienced support from GPs. Results Around three out of every four respondents (72%) consulted GPs in care matters. The respondents gave positive responses on their GP’s knowledge of the care situation (71%), approachability in various issues connecting with care and service towards the caregiver (82%). GPs’ efforts in meeting the needs and requirements of the care recipient were also rated positively (82%). Weaknesses in support from GPs mainly involved the lack of information on advice and assistance services (55%) as well as frequently not identifying or involving caregivers as such soon enough (42%). Results from regression analysis show that the last two aspects play a major role in subjective satisfaction amongst family caregivers with support from GPs. Conclusions We recommend that GPs undergo further training to reinforce awareness that the care triad of needs, requirements and stresses amongst family caregivers also plays a vital role in care outcomes. With this in mind, general practice staff should adopt a pre-emptive strategy towards approaching family members about potential issues and informing them about existing assistance and support services.

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Section: Discussionmentioning

confidence: 99%

Support, needs and expectations of family caregivers regarding general practitioners – results from an online survey

Wangler

Jansky

2021

BMC Fam Pract

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“…Healthcare professionals can support the dignity of informal caregivers of migrant patients by making sure to take them seriously in their caring role, by keeping them fully informed, by helping them build skills in providing good care, and by ensuring education about care and about the patient's disease. Especially when serving migrant patients, care professionals could facilitate a familial approach to help family members share and manage the burden of care [34]. At the same time, they should be alert to feelings and emotions in informal caregivers as caregivers tend not to share these with others [34] as part of their dignity.…”

Section: Discussionmentioning

confidence: 99%

“…Especially when serving migrant patients, care professionals could facilitate a familial approach to help family members share and manage the burden of care [34]. At the same time, they should be alert to feelings and emotions in informal caregivers as caregivers tend not to share these with others [34] as part of their dignity. Migrant caregivers could likewise be supported by welfare organizations that offer them opportunities to focus on exchanging experiences and building small-scale care skills [26], as well as providing emotional support to caregivers and discussing ways of caring for a loved one and maintaining dignity should a care handover to a nursing home be necessary.…”

Section: Discussionmentioning

confidence: 99%

Dignity of informal caregivers of migrant patients in the last phase of life: a qualitative study

et al. 2021

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Background A key aim of palliative care is to improve the quality of life of patients and their families. To help ensure quality of life for the families of patients with migrant backgrounds, this study sought insights into the dignity of informal caregivers in migrant communities. This could improve understanding of family-centered care for migrant patients. Methods Twenty semi-structured interviews with informal caregivers of Turkish, Moroccan, or Surinamese background living in the Netherlands were analyzed thematically. Results The dignity of the patient and that of their informal caregivers were found to be strongly interrelated. Most important for the dignity of caregivers was ensuring good care for their patients and preserving the patients’ dignity. Ensuring good care involved advocating for good and dignified care and for satisfaction of a patient’s wishes. For many informal caregivers, it also included delivering care to the patient by themselves or together with other family members, despite having to give up part of their own lives. Providing care themselves was part of maintaining a good relationship with the patient; the care was to cater to the patient’s preferences and help preserve the patient’s dignity, and it could be accompanied by valuable aspects such as times for good conversations. Positive interaction between an informal caregiver and a patient positively influenced the informal caregiver’s dignity. Informal caregiver and patient dignity were often compromised simultaneously; when informal caregivers felt healthcare professionals were undermining a patient’s dignity, their own dignity suffered. According to informal caregivers, healthcare professionals can help them preserve dignity by taking seriously their advice about the patient, keeping them informed about the prognosis of the disease and of the patient, and dealing respectfully with differences in values at the end of life. Conclusion The dignity of migrant patients’ informal caregivers in the last phase of a patient’s life is closely entwined with ensuring good care and dignity for the patient. Healthcare professionals can strengthen the dignity of informal caregivers by supporting their caregiving role.

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“…In the early stages of dementia, it is common for 1 person in culturally diverse families to serve as the primary caregiver [3]. As dementia symptoms progress, this primary caregiver may increasingly dedicate their time to caring for the person with dementia, giving up on their own personal activities and social life, which can subsequently result in isolation of the caregiver [37]. The strong feelings of filial or religious duty experienced by these primary caregivers may motivate them to continue to provide informal care despite increasing levels of burden [37].…”

Section: Discussionmentioning

confidence: 99%

Caregiver Burden in a Culturally Diverse Memory Clinic Population: The Caregiver Strain Index-Expanded

Franzen

Eikelboom

Berg

et al. 2021

Dement Geriatr Cogn Disord

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Introduction: Although qualitative studies have highlighted substantial barriers to dementia diagnosis and care in culturally diverse populations in Europe, quantitative studies examining the level of caregiver burden in these populations have been lacking thus far and are urgently needed. Methods: We compared the caregiver burden levels on the Caregiver Strain Index (CSI)-Expanded of 63 culturally diverse patient-caregiver dyads from a multicultural memory clinic with 30 native Dutch patient-caregiver dyads and examined the association between caregiver burden and determinants of burden. Results: Informal caregivers in the multicultural memory clinic cohort experienced a high level of caregiver burden (mean CSI-score multicultural cohort: 6.1 [SD: 3.3]; mean CSI-score native Dutch cohort: 4.8 [SD: 3.2]). Burden was significantly associated with impairment on proxy-rated and objective measures of cognitive functioning, such as the Informant Questionnaire on Cognitive Decline and the Rowland Universal Dementia Assessment Scale, and with instrumental activities of daily living. Burden was the highest in spousal caregivers. The positive subscale of the CSI-Expanded provided limited additional information. Conclusion: Caregivers of culturally diverse patients experience a high level of caregiver burden, in particular at more advanced disease stages. This study highlights the need to screen culturally diverse caregivers in European memory clinics on caregiver burden to identify those in need of caregiver support.

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Persons With a Migration Background Caring for a Family Member With Dementia: Challenges to Shared Care

Cited by 24 publications

References 19 publications

Support, needs and expectations of family caregivers regarding general practitioners – results from an online survey

Support, needs and expectations of family caregivers regarding general practitioners – results from an online survey

Dignity of informal caregivers of migrant patients in the last phase of life: a qualitative study

Caregiver Burden in a Culturally Diverse Memory Clinic Population: The Caregiver Strain Index-Expanded

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