I’ve been neglecting this blog the last week or so. I’d like to be able to say that’s for positive reasons. But I can’t. This week has been a roller-coaster, full of pain, anger and frustration. And none of those feelings are symptoms of my dementia. They're real, human feelings, like most feelings are, including when you have dementia.
This is a long post. I just want to set out some of what's happening, to share it with you. So settle in if you're up for it.
The new Alzheimer’s Society’s ads
The Alzheimer’s Society’s new fund-raising campaign, The Long Goodbye, is out now. You may have seen it. You may also have seen some of the many responses to the ads.
Now they have published a trigger warning about their own ads. I don’t want to trigger anyone here. So if you haven’t seen the ads yet and you want to, you can find them on the Alzheimer’s Society’s website.But be careful, many people can't watch beyond the first few seconds. These ads are going out on multiple platforms, in cinemas, on TV and radio. They’re coming from the national organisation which is dedicated to supporting people affected by dementia.
To avoid the ads, we’d have to hold our remote controls tight and be ready to mute or turn off in a moment, all the time. Or walk out of the cinema. Or maybe stay at home reading a book, with everything turned off. Maybe that’s not such a bad idea.
Responses
Here are two of my own small responses, tiny in the groundswell of opinions of individuals and national organisations like Alzheimer’s Scotland and Dementia Community.
Petition
In the past I’ve been on demos, made written comments and signed petitions, but I’ve never started one before. Yes, people who have dementia can do new things, we can learn and change.
Here’s the petition: https://www.change.org/dementiahope Please sign and share it if you’d like to. There’s 875 signatures now, and the comments are moving and supportive.
When/if the petition reaches 1000, maybe that will be time to send it to the Board of the Alzheimer’s Association. So anything you can do to help us get there is very welcome.
Radio interview
I’m hiding behind my sofa, because the interview I did with Jane Garvey on Times Radio is being shared so widely. I’m not used to all this. If you want to hear the interview, which is only a few minutes long, it’s Jane Garvey interviews diarist Maxine Linnell about the new Alzheimer's Society ad. With kind permission of Times Radio. - Dementia Diaries
On the Dementia Diaries site, you’ll find many many diary entries by people living with dementia. There's also information about the Dementia Engagement and Empowerment Project and Innovations in Dementia.
On my Facebook page, I’ve posted some of the powerful responses I’ve seen - they’re a hard watch, but nothing like as hard as seeing the video going out. My Facebook page name is Maxine Linnell. And there's lots more out there.
This campaign is not good for people living with dementia. It’s not good for the people supporting us. It’s not good after so much work to stop the stigma and fears about dementia, which have a direct effect on us all. This ad is not good for anyone.
It’s not true. I believe it’s unethical.
Setbacks
The Long Goodbye has already set us back, and it’s set back all the work that’s gone on over years for change. If you’re afraid of having dementia, if you think you might have it, if you have a diagnosis, if you know someone who has dementia, if you’re one of the 50% of people who will know someone who develops dementia, please don’t believe this ad’s message.
And please do what you can to stop it going out.
Nobody wants to spend years saying goodbye. We all want to live and connect with each other.
And we can.
Inaccurate
The campaign is inaccurate. So many of us are fully alive with dementia, living full and enjoyable lives. Nobody wants to have dementia, but we can adapt, we can change, just as everyone can adapt and change when we’re supported.
This campaign is going to stop people from finding and getting help.
This ad is going to delay early diagnosis, and the Alzheimer’s Society says it believes in early diagnosis. Their website has a guide to living well after a diagnosis. https://www.alzheimers.org.uk/sites/default/files/2020-03/the_dementia_guide_872.pdf
We know we’re going to die. But people are living full lives for years after a diagnosis.
Every human being is going to die. And for now we’re not dying, we’re living.
So why is it happening?
The Alzheimer’s Society has a unique position in the UK. They’re the go-to organisation for dementia. People are likely to believe what they say. So why are they running this campaign?
They say it’s about telling the ‘unvarnished truth’. That’s implying that any other views are denial. I know my life is changing. I know it’s going to change more as time goes on. I’ve been alongside people living with dementia, and dying too. I think of my close friend Kate Ruse, who died during lockdown.
None of that is denial, and the people I know aren’t in denial either.
Media guide
The Alzheimer’s Society publishes the ‘Dementia-friendly media and broadcast guide’.
Here’s a quote: ‘How dementia is portrayed in the media, arts and popular culture can have a huge impact on public attitudes towards the condition. So it's vital that journalists and broadcasters are fair and well-informed when dealing with stories around dementia.’
It’s a great guide, I think it’s really worth reading.
I wish they’d read it themselves.
This ad goes against everything they suggest in their guide.
It may contravene Human Rights Legislation, Disability Rights Legislation, and the Advertising Standard’s Authority’s codes.
We don’t know yet.
What do they think they’re doing?
And finally - really!
If you’ve been patient and kind enough to read to the end of this post, you have an idea of how I feel this week. I feel hugely supported and unified, with many friends. But I’d much rather have got on with my life. But I feel passionately about this. I think I've made that clear now!
Because contrary to the Alzheimer’s Society’s campaign, I am alive. I’m not dead, or dying, any more than everyone is.
And I want to support everyone to recognise that, be confident, live out the positives we can all share. As much as I can. For as long as I can.
I am alive, and thousands of people living with dementia are alive too.
To the Alzheimer's Society:
Please take the ads down. Please apologise publicly. Please acknowledge this is a mistake. Please listen.
Please leave a comment if you're up for that, everything you do helps us to go on.
