Andrea Sutcliffe, Chief Inspector of Adult Social Care at the Care Quality Commission.
The publicity blurb highlighted the focus would be death and dementia — how could I resist? I dragged along (with varying degrees of enthusiasm) my husband and visiting family. I am so glad we went (and fortunately, in the end, so were they!)
I have highlighted before that talking about death and dementia can help tackle stigma, but it can be difficult to do. David Baddiel shared his family’s experiences with candour, humour and affection. He was irreverent and, as a warning for the faint-hearted, there’s lots of heavy duty swearing (though I only spotted one couple leaving). He recognises and explores the sensitivity in revealing aspects of family life, especially for his father who is still alive. But David argues that talking about what is happening, finding the humour in awkward situations, helps people to understand what is going on.
The feedback he gets shows the truth of this — for anyone on Twitter just look at the hashtag #MyFamilyNotTheSitcom. Getting people to talk about dementia in particular is so important — families can feel that they are struggling alone, so knowing there are others sharing the same experience can be helpful and reassuring. Individuals may fear the diagnosis but having insight about what is happening and accessing appropriate support can help alleviate the bewildering world they are entering.
Dementia Words Matter
But how we talk about dementia is so important. I was really glad that during the evening David did not talk about “suffering from dementia” apart from quoting headlines from the tabloid press. I don’t know whether he did that deliberately or because he intuitively knew this is one of the expressions people living with dementia hate. The Dementia Words Matter campaign to reduce stigma through a focus on language that is positive is one that the Care Quality Commission heartily endorses.
It is great that celebrities like David are willing to share their family experience of dementia — it will certainly expose a too-often hidden experience to a wider audience. But we are also indebted to a host of people who have stepped forward and given voice to the practical reality of what living with dementia as the person affected or as their carer really means.
If you have not yet seen Living With Dementia: Chris’ Story, the BBC documentary about Chris Roberts, please do! Take a look at Wendy Mitchell’s blogs where she shares her journey of living positively with dementia. For a carer’s perspective, I would recommend reading Beth Britton’s blogs or the ones from Ming Ho. There are many more: We are very privileged that so many people are willing to share their experiences so the rest of us can learn and improve.
See the person
I have been privileged on several occasions to listen to Ann Johnson, an ambassador for the Alzheimer’s Society whose practical wisdom and down-to-earth, common-sense approach exemplifies what she always says:
“If you have met one person with dementia, you’ve met one person with dementia.”
Each person living with dementia is still a citizen with rights, needs and desires. There are some amazing services that get that and our Outstanding reports reveal some great practice.
What all of this really reminds us is that we should think about and celebrate what people living with dementia can do, not what they can’t. The carpool karaoke sensation of the Song A Minute Man really showed that and now Teddy ‘Mac’ McDermott has released a record which is raising money for the Alzheimer’s Society.
So thank you David Baddiel for putting dementia centre stage and making us think (while making us laugh!); thanks too to those who share their experiences to help reduce stigma and improve our understanding of dementia; and thanks to everyone in the health and care sector working to make a positive difference for people living with dementia, their carers and families — it is vital that we do.
Originally published at www.cqc.org.uk.