A recent advert by the Alzheimerās Society has caused significant backlash from both individuals living with dementia, those that love them and provide unpaid care, and professionals in the field of neurological support needs.
https://www.youtube.com/watch?v=m06RTgI3Oqk
The advert, titled āThe Long Goodbyeā is narrated by a man giving a eulogy at his mumās funeral, but instead of revelling in the life she lived, or giving a sense of how this woman spent her final years ā the man says,
āMum first died when she couldnāt work out how to prepare her legendary roast anymore,ā
and goes on to talk about how she ādiedā when she could no longer wear colourful and fashionable clothes, and ādiedā when she couldnāt participate in Christmas. The message is designed to ātug on the heart stringsā, but all it does is dehumanise people with dementia and memory conditions.
Not once does it talk about how everything she loved she could still do with skilled and personalised support, or what her family did to step up when their mum was starting to find it harder to cook for them (I think itās worth noting that we are meant to feel sorry for her family not getting cooked dinners rather than a woman getting no support).
Instead, after giving the date of her āfinal deathā a different narrator explains,
āWith dementia, you donāt just die once, you die again, and again, and again.ā
While itās clear that Alzheimerās Society believe themselves to be āraising awarenessā about dementia, they are doing nothing but embed the social narrative that disabled people, those with memory and cognition support needs, and the elderly should be relegated to the rubbish bin. It does nothing to shift the narrative that people with dementia are full human beings, with passions, interests, likes and dislikes like any of us ā and that if we donāt welcome them in the world we are missing out on a huge amount of good in society.
Like many, I lost a grandparent to dementia, and the toll on my family for caring for him was palpable ā but it wasnāt because of him, it was because of a lack of quality services, a lack of respect for people with dementia and social stigma attached to impairment.
The response on social media was quick and firm on the issue from many impacted by dementia,
One unpaid carerās response to the advert on social media,
āMy Mum has dementia and saw this advert on TV out of the blue today. She was visibly upset by it and kept asking me if it means she is going to die soon. You werenāt there for me to help calm her down & reassure her! Totally inappropriate advert!ā
And that of a dementia specialist nurse,
āDear Colleague, the sentiment expressed is deeply troubling on several levels. I hold immense respect for those who articulate their experiences of watching a family member ādie again and againā due to dementia. While it is a condition that limits life, each personās experience is distinct. Providing compassionate care, understanding, and support is crucial in improving the quality of life for individuals living with dementia. From my perspective, the language used is inappropriate on many levels in this video/clipā
These comments have elicited mealy-mouthed responses from Alzheimerās Societyās social media team, such as,
āThe ad isnāt an easy watch, but we know it shows a reality that resonates with a lot of peopleā and while claiming it was co-produced by hundreds of people ādirectly affected by dementia,ā
the script was in fact written by one woman about her experience losing her dad 2 years ago. The influence of people that live with dementia and those that want to support people to live fulfilling lives is markedly absent. I donāt doubt the trauma experienced by the writer ā but her trauma jaded lens is no reflection of reality.
In response to the criticism ā CEO of the Alzheimerās Society, Kate Lee released a statement, doubling down on this shockingly poor advert,
āThe film tells the unvarnished truth about the devastation caused by dementia. Itās not an easy watch but itās an important one, and by reading hundreds of responses across social media since we launched it, itās a reality that resonates with a lot of people.ā
But not once is any of the supposed ādevastationā centred on the impact on the individual, all on how her family became a bit sad when their mum couldnāt do things for them any more ā not that their mum was let down massively by a failing social support system in this country.
The CEOās attempts to personalise the story to her and her colleagues rings completely hollow ā and her closing line of,
āThe reality is, if we carry on doing what weāre doing, nothing will change. And I need us to make this better.ā
If she genuinely believed in improving the impact of Alzheimerās Society, she wouldnāt be withdrawing a wage in excess of Ā£150,000 while celebrating donations of Ā£120,000 from the Football Association in 2022. Ask anyone in the field of dementia support, or families struggling to get by while providing unpaid care ā we could all think of better uses of that 120k than paying 80% of the CEOās wage. Anyone with this view of dementia should not be leading the UKās most recognisable charity related to the condition.
This is standard dehumanising language that weāve seen from countless charities over the years that are not led and grounded by disabled people they supposedly represent, but this advert reminiscent of horrendous level discrimination of Autism Speaksā āI Am Autismā advert,
https://www.youtube.com/watch?v=9UgLnWJFGHQ
It does nothing but make us fear impairment ā not celebrate diversity in our community.
It is vital that we hold organisations to account for demonising our community ā one such way to do so is to complain to the Advertising Standards Authority (ASA), who regulate television and social media advertisements in the UK, following the link below,
https://www.asa.org.uk/make-a-complaint.html
Also, complain directly to the Society by which means suit you (post, phone or digitally), we need to pressure them into representing those who they claim to serve ā and use that claim to earn donations (of which frighteningly little positively impacts disabled people).
https://www.alzheimers.org.uk/about-us/contact-us/complaints
This is actually how I felt experiencing my dad go through it. Its not like its one impairment that you learn to live with. Its a continual degradation.