Stigma, Shame, and Failed Obligation in Dementia Care

Researchers disagree whether the risk of dementia varies between different populaces. Whatever background, patients with dementia will gradually develop behaviours perceived as deviant in most—if not in all—societies, such as agitation, depression, apathy, repetitive questioning, psychosis, aggression, sleep problems, wandering, and a variety of socially inappropriate behaviours. Such behaviours tend to cause stigmatisation. This chapter is based on empirical studies focused on good dementia care across cultures. In-depth interviews were conducted with a total of 49 family members and 58 nurses/healthcarers to patients with severe dementia among Norwegian Sami, immigrant nurses caring for Norwegian patients, family members and nurses in South Africa, Serbia, and Montenegro, and Vietnamese family members in Norway and in Vietnam. When family carers no longer are able to care for dependents with severe dementia themselves, shame and stigma may be the consequence, particularly in collectivistic oriented societies, as transferring the responsibility of the dependent’s care to professionals is often perceived as elder neglect and as the family carers failing their obligation. The family carers may be stigmatised by their neighbours and seen as shaming their family. Thus, the stigma of dementia may not only affect the patients, but in many cultures also the family. Worry about shame and stigma may make family carers hesitate to seek professional help even when the patient’s symptoms are serious, and help is desperately needed.