The influence of individualistic and collectivistic morality on dementia care choices

Abstract

Background: If collectivistic-oriented family carers choose professional care for dependents with dementia, they risk being stigmatised as failing their obligation. This may influence dementia care choices. Research question: How may individualistic and collectivistic values influence choices in dementia care? Method: Qualitative design with in-depth interviews with a total of 29 nurses, 13 family members in Norway and the Balkans and 3 Norwegian dementia care coordinators. A hermeneutic content-focused analysis was used. Ethical considerations: Ethical approval was obtained from the Regional Ethics Committee for Research, South-Eastern Norway, and the nursing homes’ leadership. Findings: Family domain reasons why institutionalisation of dependents with dementia was seen as a last resort: obligation towards family members, particularly parents; worry about other family members’ reactions and inability to cope with the care for the person with dementia. Social domain reasons: feelings of shame and stigma regarding dementia, particularly in connection with institutionalisation of family members. Discussion: Children’s obligation towards their parents is an important aspect of the morality of collectivistic societies. Institutionalising parents with dementia may cause feelings of guilt and shame and worry about being stigmatised and ostracised. To avoid blame and rejection, caregiver(s) try to keep the fact that family members have dementia ‘in the family’. The decision to accept professional healthcare for dependents with severe dementia or have them admitted to a geriatric institution was postponed as long as possible. Conclusion: Family care morality may constitute a significant barrier against seeking professional help for persons with dementia, a barrier based on the expectation that the family will care for their old, even when suffering from severe dementia. Hence, stigma and shame may significantly affect the provision of care. Culturally tailored information may encourage family carers to seek professional help before the disruptive influence of the disease makes institutionalisation the only feasible option.