You Say Goodbye, We Say Hell-No!

A recent advert by the Alzheimer’s 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 ‘The Long Goodbye’ is narrated by a man giving a eulogy at his mum’s funeral, but instead of revelling in the life she lived, or giving a sense of how this woman spent her final years – the man says,

‘Mum first died when she couldn’t work out how to prepare her legendary roast anymore,’

and goes on to talk about how she ‘died’ when she could no longer wear colourful and fashionable clothes, and ‘died’ when she couldn’t participate in Christmas. The message is designed to ‘tug on the heart strings’, 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 it’s 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 ‘final death’ a different narrator explains,

‘With dementia, you don’t just die once, you die again, and again, and again.’

While it’s clear that Alzheimer’s Society believe themselves to be ‘raising awareness’ 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 – and that if we don’t 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 – but it wasn’t 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 carer’s response to the advert on social media,

‘My 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 weren’t there for me to help calm her down & reassure her! Totally inappropriate advert!’

And that of a dementia specialist nurse,

‘Dear 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 “die again and again” due to dementia. While it is a condition that limits life, each person’s 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/clip’

These comments have elicited mealy-mouthed responses from Alzheimer’s Society’s social media team, such as,

‘The ad isn’t an easy watch, but we know it shows a reality that resonates with a lot of people’ and while claiming it was co-produced by hundreds of people ‘directly affected by dementia,’

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 don’t doubt the trauma experienced by the writer – but her trauma jaded lens is no reflection of reality.

In response to the criticism – CEO of the Alzheimer’s Society, Kate Lee released a statement, doubling down on this shockingly poor advert,

‘The film tells the unvarnished truth about the devastation caused by dementia. It’s not an easy watch but it’s an important one, and by reading hundreds of responses across social media since we launched it, it’s a reality that resonates with a lot of people.’

But not once is any of the supposed ‘devastation’ centred on the impact on the individual, all on how her family became a bit sad when their mum couldn’t do things for them any more – not that their mum was let down massively by a failing social support system in this country.

The CEO’s attempts to personalise the story to her and her colleagues rings completely hollow – and her closing line of,

‘The reality is, if we carry on doing what we’re doing, nothing will change. And I need us to make this better.’

If she genuinely believed in improving the impact of Alzheimer’s Society, she wouldn’t be withdrawing a wage in excess of £150,000 while celebrating donations of £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 – we could all think of better uses of that 120k than paying 80% of the CEO’s wage. Anyone with this view of dementia should not be leading the UK’s most recognisable charity related to the condition.

This is standard dehumanising language that we’ve 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 Speaks’ ‘I Am Autism’ advert,

https://www.youtube.com/watch?v=9UgLnWJFGHQ

It does nothing but make us fear impairment – not celebrate diversity in our community.

It is vital that we hold organisations to account for demonising our community – 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 – 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