I have been working in the dementia field for a long time

I have been working in the dementia field for a long time. For a large part of that I’ve been associated with the Dementia Trust and in recent years I’ve been working as their advisor since I retired from being a university member of staff.

In my long career I have worked in jobs where I had no voice at all, as when I was a civil servant and could only publicly say what my elected officials wanted. I have also worked in the media and private consultancy where I had relative freedom of speech.  I had lovely jobs like being a professional organisational leader where I could articulate the views of my members, as established by a voting mechanism. Now being in receipt of a pension has given me absolute freedom. No one can sack me. No one can discipline me. I hope that in spite of that radical freedom I have always been moderate in my views, but bold in their expression while listening to others.

The Dementia Trust is a great organisation made up of volunteers who don’t have strong opinions on anything much about dementia except that things need to be a great deal better and people need to be looked after with more kindness and on an evidential basis, whether they are staff, people with dementia, or their families. They’ve been working tirelessly and without reward for decades to make that happen, sometimes in small ways like sponsoring a little bit of travel for a lecturer and sometimes in very big ways like funding and establishing world’s first dementia centre with global influence (based in Scotland) and supporting it for decades.  I have been their advisor for a few years and now I am retiring from that.

Storm in a teacup

This personal move coincides with yet another storm in a teacup in the world of dementia. The biggest richest dementia advocacy organisation in the UK has dared to publish a commercial that in view of some people over-emphasises the pain suffered by carers of people with dementia. Such a lot of people felt that they were entitled to condemn them and call for them to be boycotted.  I’ve never been their biggest fan, but I always feel for an underdog, and I didn’t think the commercial was entirely bad, so I made some positive noises of support.

“Such a lot of people felt that they were entitled to condemn them and call for them to be boycotted.  I’ve never been their biggest fan, but I always feel for an underdog, and I didn’t think the commercial was entirely bad, so I made some positive noises of support. ”

I also pointed out that there is a history in dementia advocacy of toxic positivity. This isn’t just encouraging people to look on the bright side and make the best of things.  It is a swift cancelling action against anyone who dares to mention the downside.  It’s a process that causes moral injury to anyone who feels down, because they are forbidden to express it and even told that they are wrong. Their feelings are denied. So many other negative relationships are called to mind. “Stop crying or I’ll give you something to cry about.” “You’re imagining it, there’s nothing wrong.” “Look like you are enjoying yourself or I’ll give you a slap.”

I wouldn’t want people to think I am backing off because I have been slapped.  I certainly don’t agree with those who think I’m not entitled to express a view because either a) I don’t have cognitive impairment or b) I’m not a carer, or c) I’m just an academic in an ivory tower- assumptions about me made by critics without any evidence.  Does everyone have to display clinical records, a carer’s pass, and video evidence of them working in a volunteering situation to get to speak about one of the commonest causes of death?  And if you kept your nan cheerful and do more volunteering than I do, are you entitled to a louder voice than anyone?  Of course, it’s just silly.

I’m not bored with my lovely friends and clients affected by this dreaded disease for which there is no cure.  I’m bored with the posturing, much of which is created by competition between fundraisers, schools of thought and blind followers of each.  It’s such a shame they spend so much time self-righteously fighting each other while the real enemy marches on relentlessly.

I’m still here but stepping back from some of the formal connections and just want to say thank you again to all those who’ve let me travel the road alongside them. We are all just walking each other home. Let people take their own path, if they want, and use your time more productively.  Time is the only thing in this world that is truly rationed, and dementia is the thief of time.

—Professor June Andrews, March 2024