Pre-decision regret before transition of dependents with severe dementia to long-term care.

BACKGROUND: To place a dependent with severe dementia in a nursing home is a painful and difficult decision to make. In collectivistic oriented societies or families, children tend to be socialised to care for ageing parents and to experience guilt and shame if they violate this principle. Leaving the care to professional caregivers does not conform with the cultural expectations of many ethnic groups and becomes a sign of the family's moral failure. RESEARCH DESIGN: Qualitative design with individual in-depth interviews with nurses, family members and dementia care coordinators in Norway, Montenegro, Serbia and South Africa. Braun and Clarke's six analytic phases were used. ETHICAL CONSIDERATIONS: The project was approved by the Regional Committee for Research, South-Eastern Norway; the Norwegian Centre for Research Data; the Ethics Committee; University of Limpopo, MEDUNSA Campus, South Africa; and by the local heads of the respective nursing homes or home care services. Interviewees were informed orally and in writing and signed an informed consent form. FINDINGS: Healthcare professionals tend to be contacted only when the situation becomes unmanageable. Interviewees talked about feelings of obligation, shame and stigma in their societies regarding dementia, particularly in connection with institutionalisation of family members. Many lacked support during the decision-making process and were in a squeeze between their own needs and the patients' need of professional care, and the feeling of duty and worry about being stigmatised by their surroundings. This conflict may be a source of pre-decision regret. CONCLUSION: Family caregivers need help to understand the behaviours of persons with dementia and how to access the formal and informal services available. Thus, they may provide effective support to patients and family carers alike. Supportive interventions for caregivers need to be tailored to meet the individual needs of both the caregiver and the persons with dementia.

The influence of individualistic and collectivistic morality on dementia care choices.

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.