Breaking the silence over receiving a dementia diagnosis | by Jem Bhatt and Katrina Scior

Recently, Dame Barbara Windsor and her husband Scott Mitchell publicly modelled a deliberate and careful decision about ‘who to tell, how and when?’ about a diagnosis of dementia. In Dame Windsor’s case, over three years after receiving the initial diagnosis and sharing it in closer circles, the couple decided to tell the public via an interview with The Sun. 

We’re told they reached this decision because the symptoms could no longer be concealed. Others may choose very different ways of talking about their dementia diagnosis and may have very different reasons for doing so. What seems crucial though in Barbara Windsor’s decision, is that she appears to have had the space and support to decide what felt right for her. This may not be the case for many of the other 550,000 people with dementia in the UK. Hence our new UCL Unit of Stigma Research (UCLUS) focuses on ensuring that persons diagnosed with dementia have a (loud and central) voice in talking about dementia. The ‘Who to tell, how, and when?‘ intervention, currently under development, seeks to empower persons living with dementia in deciding how to share their diagnosis and offers a supportive space where they can discuss what it means to them personally. Support for  this intervention comes from previous research and 232 responses to a public consultation we’ve run, which highlights the difficulties that disclosing a diagnosis of dementia can pose, such as worry that others will view one differently, avoidance and exclusion and not knowing what language to use. Ninety per cent of respondents to the public consultation said that people with dementia would benefit from an intervention that tackles the barriers of telling others about a diagnosis of dementia. This view is illustrated in this response from a person with dementia, “the more we talk about it, the less isolated we would feel”.

In Western society, a diagnosis of dementia generally triggers talk of tragedy, suffering and injustice (is any disease ‘just’?). Language used in the media such as ‘cruel disease’, ‘living death’ or alarmist messages such as the Daily Mail’s headline “Just ONE sleepless night could spark Alzheimer’s” has rapidly placed dementia in the popular imagination as the unspeakable illness, a place occupied by cancer not long ago. There is a different view of life with dementia, one that is ability driven and based in possibility. Individuals such as Chris Roberts, featured in a 2016 BBC Panorama programme and active on Twitter as @mason4233, epitomise this alternative view. Chris has not let his diagnosis get in the way of living well, and is very active in educating others about dementia. The message from individuals like Chris and our research is that in talking about dementia, we need more conversations about inclusion and collaboration, and we need to hear from those living with dementia first and not last.  

Including persons with dementia in decision making has become a priority both in the NHS and international movements. This often translates into ensuring that the wishes of people with dementia are upheld when they can no longer make decisions. Ensuring that they contribute actively to decisions throughout the course of their illness, including in deciding with whom, how and when they want to share their diagnosis must be part of this process. Our new intervention will not provide a quick fix for the high levels of stigma attached to dementia. It will be the first of its kind though to put people with dementia in the driving seat in managing their diagnosis. Alongside society wide initiatives such as Dementia Friends, Who to Tell, How, and When seeks to tackle deeply held negative perceptions of dementia and move from painting people affected by dementia solely as “sufferers” to seeing them as active agents who have the right to be acknowledged, respected and heard.

Who to Tell, How, and When? is just one of the areas of research tackled by stigma researchers at University College London. Read more about UCL’s Unit for Stigma Research (UCLUS).