Family members' experiences of dementia

This research explored family carers’ and professional carers’ experiences of pre-clinical dementia in the people they looked after. 

Dementia image primary


Research background

There are currently around 850,000 people living with dementia in the UK. Dementia results in disability, emotional strain and financial loss for people with dementia, family members and nations. Informal identification of social and behavioural risk signifiers could facilitate timely interventions with potential to delay onset of serious disability.

Research aims

In this study, the academics explored family carers’ and professional carers’ experiences of pre-clinical dementia in the people they looked after. Focus groups enabled in‐depth understanding of the participants’ experiences of life or work with people who subsequently developed dementia.  Findings revealed that preclinical signs of dementia were identifiable in retrospect.

Participants’ accounts resulted in four themes, “Lowered Threshold of Frustration”, “Insight and Coping Strategies,” “Early Signs of Poor Memory” and “Alarming Events.”

How has the research been carried out?

They used purposive sampling to recruit family carers and professional carers who had cared for people who later developed dementia. The data from focus groups were fully transcribed and anonymised, and transcripts were analysed by two researchers. These researchers coded and analysed the transcripts independently; subsequently, overlapping and similar themes were identified and consensus reached on final themes. A third researcher was invited to review the analysis and ensure trustworthiness of the study findings.

Research outcomes

Earlier recognition of preclinical signs of dementia would allow affected individuals to follow health promotion advice and plan for the future. Identification of social exclusion prior to diagnosis has implications for anti-stigma campaigns and development of “dementia‐friendly communities.”

Healthcare professionals could work with those at risk, facilitating lifestyle changes to postpone symptoms and advance planning for improved autonomy. Pre-dementia should be viewed as a disability for which reasonable adjustments can be made at a community level, to enhance and extend emotional well‐being and social inclusion.