Making Sense Of Dementia Risk And Its Prevention – A Qualitative Process Evaluation Of The In-Mindd Trial

The problem

Dementia is a serious loss of cognitive ability beyond that expected from normal ageing. It has profound personal impacts on patients and on their family and friendsand significant societal costs. Preventing and/or delaying the onset of dementia would result in significant personal benefits for individuals and substantial health care savings. While dementia is incurable, there is increasing evidence that it can be prevented or delayed by following a healthy lifestyle in middle age, e.g. by addressing hypertension, obesity, smoking, physical and psychosocial activity long before an individual may develop dementia.In-MINDD (INnovative, Midlife INtervention for Dementia Deterrence) is an FP7 EU study which aims to reach potential future patients when they are in mid-life (age 40-60) and help them adopt lifestyle changes that may reduce their risk of developing dementia, or delay its onset.In-MINDD has developed an online questionnaire to determine an individual’s dementia risk and an online support system which suggests personalised strategies to reduce this risk. The system in currently being trialled in four European countries. A qualitative process analysis is embedded in the trial.

The approach

Qualitative study involving semi-structured interviews with participants in the In-MINDD trial: 30 participants (from the four countries: Scotland, Ireland, France and The Netherlands) and 10 primary care professionals (from Scotland and Ireland). Normalisation Process Theory was used as the underlying conceptual and analytical framework. Understanding of dementia and dementia risk were explored along with the barriers and facilitators to engaging with a process of dementia risk reduction.

Findings

Overall understanding of modifiable risk factors was low among both health professionals and participants with both groups believing that individual agency and actions were negated by non-modifiable factors particularly genetics. As a result, few had previously considered lifestyle changes to reduce their, or others, risk.Health professionals talked about patients expressing a particular fear of dementia; participants themselves articulated concerns around developing dementia in the future. Such fears were often associated with proximity to people with dementia (family and friends particularly).Participants believed they were particularly receptive to being supported to make lifestyle changes because their stage of life made them aware of their own mortality – they believed they had a ‘window of opportunity’ in which to make changes.Participants were not solely motivated to reduce risk of dementia, rather they realised that making lifestyle changes reduced their risk of developing a number of illnesses including dementia, cancer, heart disease and diabetes.Consequence This study has highlighted poor understanding of the modifiable nature of dementia risk. However it also highlights the readiness of a cohort in midlife to engage in a process of dementia risk reduction, suggesting that dementia prevention could be successfully raised by practitioners with their patients.

Credits

• Susan Browne, Dublin City University, Dublin, Ireland
• Karen Wood, Dublin City University, Dublin, Ireland
• Kate O'Donnell, Dublin City University, Dublin, Ireland
• Maria Pierce
• Kate Irving