Knowing about forgetting: Perspectives and outcomes regarding dementia in family caregivers with a Turkish, Moroccan or Surinamese migration background - PhDData

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Knowing about forgetting: Perspectives and outcomes regarding dementia in family caregivers with a Turkish, Moroccan or Surinamese migration background

The thesis was published by van Wezel, Nienke, in April 2022, VU University Amsterdam.

Abstract:

The research presented in this thesis aimed to gain an understanding of experiences with family care, explanations given for the causes of dementia and the communication about dementia among family caregivers from Turkish, Moroccan and Surinamese Creole migrant groups in the Netherlands. An additional aim is to provide a picture of the effects of the “Knowing about forgetting†educational programme on the knowledge, ability to talk about dementia, use of informal and professional care, perceived pressure of care and quality of life of Turkish-Dutch and Moroccan-Dutch family caregivers of people with dementia. Chapter 2 looked at the perspectives of female caregivers with a Turkish, Moroccan or Surinamese Creole background on dementia and on communication about dementia.The family carers interviewed often considered dementia as a natural consequence of ageing. The explanatory model ‘dementia as a neuropsychiatric condition’, was rarely expressed by the family caregivers. The family caregivers generally communicated openly about the dementia with their close family. Communication within their broader community was often hampered, e.g. by feelings of shame. Chapter 3 gives us an understanding of the perspectives of female caregivers with Turkish, Moroccan or Surinamese Creole backgrounds on family care. The caregivers saw family care as a task that they should carry out with respect and love. Especially family carers of Turkish or Moroccan origin felt that family care is superior to professional care and that it is principally a task for women. Chapter 4 addressed the following research question: • What are the internal consistency and validity of the DKS as completed by family caregivers with a Turkish or Moroccan background? The internal consistency of the DKS was adequate for the Turkish version but not for the Dutch version. Chapter 5 addresses the following main research question: • What is the internal consistency and the known group validity of the Turkish version of the SSPIC as completed by family caregivers of people with dementia in Turkish migrant communities in the Netherlands? The internal consistency of the SSPIC was good, as Cronbach’s alpha was 0.94. Furthermore, the known group validity of the Turkish version of the SSPIC was good. Chapter 6 addresses the following main research questions: • Does participation in the educational peer-group intervention “Knowing about forgetting†in family caregivers with a Turkish or Moroccan background result in – improved knowledge about dementia? – improved perceived ability to talk about dementia or severe memory problems? – increased use of informal or professional support? – decreased self-perceived pressure from family care? Multilevel analyses showed that knowledge about dementia and about care and support options improved significantly more in participants who received the educational intervention than in those in the control condition. Furthermore, in the participants who received the educational intervention, there was a significant increase of support from home care staff, which was not found in the control condition. Neither were there effects on the perceived ability to talk about dementia or severe memory problems and on self-perceived care pressure. Chapter 7 provides adresses the following research questions: • What is the health-related quality of life of family caregivers of people with dementia with a Turkish or Moroccan background living in the Netherlands? • Can the health-related quality of life in these groups be enhanced by the implementation of the educational peer group intervention “Knowing about forgettingâ€? The quality of life at baseline (T0) was generally moderate, although significantly lower in family caregivers with a Turkish background and in females than in caregivers with a Moroccan background and in males. A low quality of life was associated significantly with a relatively high self-perceived care pressure.



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