De-medicalising dementia

The period immediately following diagnosis of any illness is a troubling time. When the diagnosis is of a dementia, then the feelings of loss, grief, anger and sadness must be intense. Grief is not too strong a word – because there is a period of grieving for what might have been – the plans that now need to be changed or shelved. Often too, there is a need for people to genuinely understand this news, a period of coming to grips with preconceptions they may have about dementia as a death sentence – to grapple with society’s stigma.

The arts have two roles to play here. Firstly, we can challenge stigma. In recent years, many arts organisations have done great work in showcasing the ways in which people can live well with dementia. Where this works it is led by the people living with the health condition – not as the imposition of someone else’s interpretation of how things might feel. This is at the heart of the Wellcome Hub’s Created Out of Mind exploration – with great work by organisations like Living Words giving voice and platform for people with dementia to express how they feel today. This work helps to shape a public narrative which is owned by people with a dementia and their families – not one imposed by medical definitions or outdated imagery.

There is another role for the arts though – similar but distinct – which is about repositioning the process of responding to a dementia diagnosis. By reframing our responses to the news of diagnosis, the arts can disrupt the medical model – which has to focus on what is lost – to one which explores assets, even generates feelings of hope. The arts can help people to find new sense of their changed circumstances. This may be a forum or a canvas for people to explore their feelings post diagnosis – to share time with their loved ones, to exchange ideas about the future which are not about deficit but positives.

This isn’t easy. Lots of people take a considerable time to find the arts post diagnosis. Too few clinicians are encouraging people towards creative opportunities. Too often projects are patchy or short term so not available to all. More needs to be done to demystify the arts and make people feel that they will be made welcome. Great projects like Meet Me at the Albany (while not focused on dementia – exactly the sort of asset-based approach that supports post diagnosis) are few and far between. It is also fair to say that some arts organisations don’t try hard enough to reach people who are not already engaged with the arts. And some funders are more interested in the number of attenders at creative sessions rather than the impact it has on those who participate. The notion of the “hard to reach” arts audience persists and pervades in a lot of dementia/arts provision.

Lots of evidence indicates the arts can re-frame responses to dementia and the earlier we encounter creative opportunities the more impact it is going to have. That is why we are so proud to be partnering with Mersey Care to examine what role the arts can play in the period immediately following a dementia diagnosis. We are going to be doing two things – some research into what activity is currently happening to bring creative opportunities to people post diagnosis; and also commissioning an artist to explore an asset-based approach to mapping life post-diagnosis. There is more information about this work here and we will be writing more about this as the work progresses. If you are an artist and interested in working with us, get in touch before 4 December.

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