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.