Background

Persons with dementia, who reside in their own homes, are often cared for by family members or friends. The presence of a family career is said to have a protective effect, postponing admissions to residential care. The majority of persons with dementia develop behavioural and personality changes during the disease trajectory. The quality of life for both the person with behavioural and psychological symptoms and their careers are affected, increasing both suffering and risk for hospitalisation. Family careers to persons with dementia have identified behavioural changes as more distressing than cognitive impairment leading to increased burden of care and admissions to residential care. Knowledge gaps exist regarding how family careers living with persons with dementia experience behavioural and psychological symptoms in a community setting. Aim: To describe spouses’ experiences of living with partners who have neuropsychiatric symptoms related to dementia.

Method

Semi-structured interviews were carried out with 14 spouses of partners with dementia. The interviews included the completion of the NPI (Neuropsychiatric Inventory, Cummings, 1994). Interview data was analysed using content analysis.

Results

The neuropsychiatric symptoms identified were within three of four possible symptom categories; Behaviour, Psychosis and Mood. From the narrative data three main themes emerged; Coping, Domestic violence and vulnerability and Social isolation.

Conclusions

A large proportion of persons with dementia reside in the community, a greater awareness, within the emergency response services about the welfare and safety of these persons and their families is required. Support offered to persons with dementia and their families should be more person-centered meeting their individual needs.