What do patients know about dementia and its risk factors? A qualitative study of participants in the In-MINDD feasibility RCT
Dementia prevalence continues to increase worldwide, placing a strain on economies, health and social services and on those diagnosed with dementia and their families. Risk factors have been identified including depression, physical activity, diabetes, hyperlipidemia, smoking and midlife obesity and hypertension. Surveys in numerous countries have reported varying levels of public knowledge about dementia and generally poor knowledge of modifiable risk factors. Fewer studies have qualitatively investigated people’s views on dementia and risk reduction, especially in mid-life. As part of the In-MINDD (Innovative, Midlife Intervention for Dementia Deterrence) feasibility randomised controlled trial, we explored individuals’ understanding and views of risk factors for dementia, especially those modifiable in mid-life.
The In-MINDD feasibility RCT was conducted in four European countries – Ireland, Scotland, The Netherlands and France. A sub-sample of study participants (n=46) participated in semi-structured interviews about their views on dementia and experience of participating in the intervention. The interview schedule was developed and transcripts coded using Normalisation Process Theory (NPT). Coding was led by the Scottish team using an NPT-informed framework; regular coding clinics were held by the team to discuss and agree coding decisions. Here, we focus on the ‘Coherence’ construct of NPT and in particular participants’ understandings of dementia, knowledge of risk factors and thoughts on their own risk of developing dementia.
Most participants had some knowledge of dementia, despite many initially stating they did not know much. Knowledge of risk factors for dementia was mixed. Many participants spoke about genetics. Knowledge about modifiable risk factors, such as smoking or physical activity, was scant. Some had never associated them with the risk of developing dementia; others did speak about lifestyle factors but this was often in general, not in relation to dementia. Divergent responses were given by participants about their own risk of developing dementia – some had never considered it, whilst others were very concerned. Having a family history of, or knowing someone with, dementia and noticing their own forgetfulness were important factors in participants’ concerns. Participation in the In-MINDD study was often the first time participants had received any information about the potential impact of lifestyle on their risk of developing dementia.
While the profile of dementia in terms of policy, media and public awareness has grown in recent years, it appears a lack of understanding– particularly of lifestyle risk factors – remains. Increasing knowledge about modifiable risk factors of dementia and ways in which individuals own risk could be reduced may encourage them to make changes to their lifestyle. Furthermore, as risk factors for dementia are similar to other diseases such as CVD and diabetes, practitioners could incorporate dementia into lifestyle change discussions with patients.