Dementia Centred

Wendy Perry's picture

By Wendy Perry

May 18th, 2016

Rewriting the story of dementia and diagnosis

This week the Alzheimer’s Society released the results of a poll which indicates over half of people put off getting a diagnosis of dementia, and that dementia is the most feared health condition in the UK. In fact 62% of people polled felt that receiving a diagnosis of dementia would mean their life was over. Polls like this show us how far we have to go in changing the social stigma of dementia, but they also show us something about the public and private divide when it comes to what we believe other people should do versus what we should do ourselves.

People in health and social care as well, as in the community, have supported the national dementia strategies, focussed on making communities more dementia friendly. They appear to feel that supporting people with dementia is an important thing to do, but how does that impact their concerns about a potential diagnosis for themselves?

Getting diagnosed as early as possible increases the time when people can concentrate on spending time with the people they love doing the things that matter most to them. Early diagnosis also allows people to access treatments at a time when they can be most impactful, and utilise support services both for themselves and for their loved ones. Arguably, one of the biggest advantages of early diagnosis is that the individual can have an active voice in making decisions for care and support in the future. With delayed diagnosis, people run the risk of missing the window in which they can be in control of the decision-making process about their own future.  

Intellectually, a person may understand that an earlier diagnosis can provide increased quality of life for all of the reasons listed above but how does that balance out with protecting their personal identity in the eyes of others for a little longer? Once a diagnosis is known it does become a part of an individual’s narrative, and it appears that some people are actively choosing to put off writing that chapter. Perhaps it is helpful for us to think about timely diagnosis, which is not about diagnosing someone at the earliest possible opportunity, but rather at the time that feels appropriate to them. The fact that people are not choosing to seek a diagnosis as soon as they suspect they may have a problem  is an indicator that, as a society, we have reinforced the message that people stand to lose more than they gain by seeking a diagnosis. The messages being highlighted in the media are still focussed on loss of identity and capacity, but the reality is that many people who have sought early diagnosis are experiencing meaningful quality of life and discovering new opportunities post-diagnosis.

A recent study, conducted by researchers from the University of the West of Scotland and Bournemouth University, showed that positive changes were made in people’s perceptions of what individuals with dementia are capable of following attendance at a public performance of a BUDI symphony concert (Reynolds et al, 2016). The symphonies were made up of people with dementia, family members, student volunteers and professional symphony orchestra members.  Pre- and post-event questionnaires were distributed to the audience to measure attitudes regarding what they knew about dementia and what their expectations were about the abilities of someone with dementia. The results highlighted that there is still a level of stigmatisation about dementia in the public, and that by witnessing a single performance in which people with dementia were featured as active contributors, perceptions were positively changed about the ability of people with dementia to contribute to society in meaningful ways.

So with all of our discussion about dementia friendly communities, perhaps we should expand our vision about dementia friendly societies and consider how we can highlight messages of hope and create positive opportunities for contributions by people who are diagnosed. We know that one of the ways in which attitudes and perceptions are altered is through the examples of people who are living with dementia. These individuals serve as an example to others about how life does not end with diagnosis and how they can continue to have a meaningful impact on their families, communities, and the larger society. Through the work of groups like the Scottish Dementia Working Group (SDWG) and the Dementia Engagement and Empowerment Project (DEEP) and other groups made up of people living with dementia, a new narrative is being written of what life post-diagnosis can be, and this benefits all of us. 

Reynolds, L. [et al.] (2016) ‘The stigma attached isn’t true of real life’: Challenging public perception of dementia through a participatory approach involving people with dementia (Innovative Practice). Dementia, published online ahead of print. doi: 10.1177/1471301216635828

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