"Focussing only on the physical safety of someone with dementia can result in the person’s psychological and social wellbeing being neglected or 'silently harmed'," says Professor Clarke. "Being too risk averse in one’s approach can make it even more difficult for the person with dementia to maintain their all-important sense of identity, ability to contribute, social relationships and quality of life. As a result, the person with dementia may experience a more rapid decline in feeling they are valued and that their life has purpose."
The complexities of managing life with dementia will be highlighted in a fictionalised theatre performance and workshop during the Economic and Social Research Council (ESRC) Festival of Social Science. Created by Skimstone Arts, the play 'Jack and Jill and the Red Postbox' is based on transcripts from 89 interviews with people with dementia and their family members. This research was conducted as part of a 'Risk and Resilience in Living with Dementia' project led by Professor Clarke.
The play raises awareness of the silent harms which can follow once a person has a dementia diagnosis. For example, in the play, 'Jill', who has dementia, goes out and events lead to panic among relatives who believe her to be missing. Concerns are raised about whether Jill should be allowed to leave the house on her own in future and constantly watched to check where she is. "Carers are frequently anxious and hyper-vigilant about the person with dementia," Professor Clarke points out. "And this concern can lead to them avoiding activities that are meaningful to the person with dementia and indeed support their sense of who they are, for example, meeting people, going for a walk, cooking or helping with grandchildren."
The promotion of early diagnosis of dementia also requires a better understanding of how to live well with dementia to avoid carers’ concerns having a negative impact on people with dementia’s identity. Decisions around employment or the freedom to drive need careful consideration that balances risk with negative impact. Employers, however, are not the only people to make hasty assumptions about the capabilities of a person with dementia. "Dementia can frequently be seen as a catastrophic diagnosis which can quickly lead to isolation if employment and other social networks are lost," Professor Clarke explains.
Risk enablement in contrast to risk aversion is the best approach to take once dementia has been diagnosed, researchers insist. The key is not immediately to strip people of the important parts of their identity but to find ways to allow those with dementia to do things which are important to them – albeit in an increasingly supported way.
"Rather than simply stopping something which is perceived as risky such as going for a walk, we need to think about finding ways to make it possible," says Professor Clarke. This could include involving other people – such as alerting neighbours, using volunteer help, informing the police of the person’s address, employing new GPS or mobile phone technology or engaging peer support.
Ultimately, researchers point out, taking things away from people with dementia removes their sense of who they are. Taking a few risks is as important for the quality of life of a person with dementia as anybody else.