How people with dementia and carers understand and react to social functioning changes in mild dementia: a UK-based qualitative study

OBJECTIVES: To analyse people with dementia and their family carers’ attribution of social changes in dementia and the consequences of these attributions. DESIGN: Qualitative study, using a semi-structured interview guide. Individual interviews continued to theoretical saturation. Two researchers independently analysed interview transcripts. SETTING AND PARTICIPANTS: People with mild dementia and family carers purposively selected from London-based memory services for diverse demographic characteristics to encompass a range of experiences. PRIMARY AND SECONDARY OUTCOMES: Attribution of social changes experienced by the person with dementia and the consequences of these attributions. RESULTS: We interviewed nine people with dementia and nine carers, encompassing a range of age, ethnicity and educational backgrounds. Both groups reported that the person with dementia had changed socially. People with dementia tended to give one or two explanations for social change, but carers usually suggested several. People with dementia were often socially embarrassed or less interested in going out, and they or their relatives’ physical illness or fear of falls led to reduced social activity. Carers often attributed not going out to a choice or premorbid personality. Carers found that their relative needed more support to go out than they could give and carers needed time to themselves because of carer stress or other problems from which they shielded the person with dementia. Additionally, there was decreased opportunity to socialise, as people were bereaved of friends and family. Participants acknowledged the direct impact of dementia symptoms on their ability to socially engage but sometimes decided to give up socialising when they knew they had dementia. There were negative consequences from social changes being attributed to factors such as choice, rather than dementia. CONCLUSION: Clinicians should ask about social changes in people with dementia. Explaining that these may be due to dementia and considering strategies to overcome them may be beneficial.