Cultural variability in dementia caregiver motivations: Unraveling unique and common drivers.

Abstract

Introduction: In the Netherlands, approximately 800,000 individuals act as informal caregivers for people with dementia. Current policies prioritize care within the home setting, often relying on informal caregivers for support, assisted by care professionals. Given the wide ethnocultural diversity among dementia caregivers in the Netherlands, it is crucial to understand how these cultural differences influence caregiving. Given the emphasis on researching barriers to providing care in literature, this study specifically focused on motivators and facilitators to providing care. Methods: We conducted semi-structured interviews, both with caregivers of native Dutch patients (n = 11) and caregivers of patients with a migration background (n = 9), who all provided care at home for patients with dementia. Data was collected using an interview guide and open, axial and selective coding were used to analyze the transcripts of the interviews in Atlas.ti. Results: Four themes were identified. First, culturally shared motivators to providing care emerged, such as having a unique bond with the person with dementia and themes of reciprocity. Second, culture specific perspectives were identified, with Dutch caregivers often spontaneously reporting considering professional care, while culturally diverse caregivers stressed the available network of informal caregivers and their ability to persevere. Third, personal philosophies on life were a driver to provide care for caregivers of native Dutch patients, while religion mainly served as a source of strength in continuing to provide care in the culturally diverse group. Lastly, adult child caregivers benefit from supportive home environments and from using structure and routine in providing care. Discussion: Our findings show that the decision to provide care often seems driven by reciprocity and the prior quality of the relationship with the person with dementia, contrasting with previous work suggesting that religion is a main reason to provide care. Several recommendations are made how care professionals can take these factors into consideration when assisting caregivers.