Statement by the Board of Dementia Community

Board members are deeply concerned about the new Alzheimer’s Society advertising campaign which equates living with dementia as enduring multiple deaths. Such a comparison undermines the humanity and dignity of people living with dementia and perpetuates negative stereotypes and misconceptions. We accept that dementia faces people with challenges and changes, but to imply that dementia involves milestones of loss of a person’s worth and identity is harmful and debilitating and undermines the efforts of the many people who care very personally every day.

We very much value our longstanding relationship with Alzheimer’s Society and commend the organisation’s awareness-raising efforts over many decades, working to transform society’s understanding of dementia and promoting the key message that people can, and do, live well with dementia. 

The new campaign resurrects a negative construction of dementia, disregarding hope, meaning and purpose. This is at odds with Dementia Community’s values of trust, inclusive community, inspiration and learning. We believe it will always be unacceptable to diminish the unique qualities and strengths of people living with dementia.

Dementia Community’s intention is to promote and facilitate constructive debate. We invite the Alzheimer’s Society to engage in a meaningful dialogue with our community about this campaign and its impact.

We are collating opinions and comments regarding this subject, if you would like to contribute, please email us at

Comments received directly to Dementia Community in alphabetical order:

Please note: These contributions have not been edited by Dementia Community, and some language used may not conform to our guidelines.

The Alzheimer’s Society say they recognise dementia as a disability according to national law and international convention and have produced reports and campaigned hard to promote disability rights. Yet this new campaign film ‘The Long Goodbye’ does not represent this understanding of dementia at all. In fact, I would go so far as to say, it contravenes article 17: Protecting the Integrity of the person, United Nations Convention on the Rights of the Person with Disabilities (CRPD). This article states that ‘every person has a right to respect for his or her physical and mental integrity on an equal basis with other’ – integrity is the quality of being whole and complete.  

In this 90-second film the word ‘death’ or ‘died’ is used eight times in relation to a person with a disability (dementia). The scene is a funeral, and the narration is based on the idea that the person was ‘less whole’ and progressively ‘incomplete’ due to impairment effects. I cannot see a campaign film like this being made about any other disability.  Imagine if it were about someone with motor neuron disease, say – ‘they first died when they used a wheelchair’ or ‘when they could no longer vocalise’.  Every person has a right to respect for his or her physical and mental integrity on an equal basis with others, and as the Alzheimer’s Society should know, this includes people with dementia.  

According to the Alzheimer’s Society Annual Report, in 2021/22, £9 million was spent on rebranding to create a ‘Help and Hope strategy’. The investment was designed to ‘decrease the stigma and increase the number of people getting an accurate diagnosis of dementia’.  I do not see how the campaign film ‘The Long Goodbye’ will help with that.  I think it is more likely to increase the stigma and shame of impairment effects, such as no longer being able to recognise a family member, and possibly even put people off getting a diagnosis if they believe this is the trajectory. 

Ruth Bartlett, Associate Professor, University of Southampton 

I’m just adding my thoughts about the recent advert/publicity campaign from the Alzheimer’s Society. 

My best friend, Peter, lives with dementia. Everything he does is designed to be positive, to promote living well and to enjoy life. He focuses on the things he can do. Obviously, he knows the reality of the future but, like all of us, he doesn’t know when that future will be the present. 

Whilst I understand what the AS were trying to do with this advert, we all (Peter, his wife and I) have found it counter-productive to their aims in life.  When Peter forgets how to do something (recently he forgot how to open the bottle top of some beer), he doesn’t ‘die’ (apart from of thirst, he joked with me); we simply show him how to open it and we move on.  

Peter, Teresa and I wanted to voice our disappointment at this publicity and, whilst recognising it was done in conjunction with some People Living With Dementia, it does not represent their perspective on the condition. 
Deb Bunt, AlzAuthor

Dear Dementia Community 

Thank you for standing up to the Alzheimer’s Society “long goodbye” ad campaign. 

I have given the feedback below to the Alzheimer’s Society. 

My mother “Anna” died on the 10th March 2024, having lived with mixed vascular and Alzheimer’s dementia for the past ten years. 

When telling her friends, a number have made comments like “the Anna that we knew and loved died years ago”. 

I find this very hurtful and not reflective of her as a person. 

She has been in a different stage of her life with dementia. Infancy, childhood, adolescence, young adulthood, middle age and early old age are other stages. In every stage she has been a person who has engaged, lived, laughed and communicated with those around her. 

One of her carers, who has only known her for the past five years, speaks movingly of how important that relationship has been to her and how wonderful my mother is. 

The Alzheimer’s Society advert is unhelpful and does not reflect reality 

My mum didn’t die when she forgot her recipe for Yorkshire pudding or could no longer distinguish flowers from weeds. 

She didn’t die when she could no longer stand or walk, when she lost her ability to speak or could no longer feed herself. 

She died when her life ended. 

She was lovable, loved and loving throughout her dementia journey. 

Perpetuating the myth that the person people loved is no longer there makes it easier for people not to engage with a person with dementia. 

Letting go of who the person was, and accepting and being with who they are now,  is a key part of loving someone with dementia. It’s not easy to do, especially if the person has a key role in your life, such as parent, spouse, close friend. 

That is what you should be showing and supporting. Show positive images of what it is like to live with dementia rather than negative images about dementia being a long slow painful death. It doesn’t have to be that way and is not my experience. 

People with dementia are stigmatised and written off as it is. Please don’t be part of that. 

Catherine Billam 

Dear Dementia Community 

Thank you for your thoughtful response to The Alzheimer’s Society with which I agree entirely. 

I have worked in dementia care approaching 40 years this October, including 5 years with The Alzheimer’s Society in the 90s so I too have a longstanding relationship with The Society. 

Like many others, I have devoted much of my career trying to reduce stigma and negative stereotypes and to encourage and promote positive views of hope, value, love and possibilities. I must admit in the past to being uncomfortable with the ultra-positive views that could be promoted as I saw first-hand people who felt like failures or unwilling to speak up about difficulties they were experiencing, as they felt they weren’t able to live as well as expected with their dementia. So I do recognise there is a balance to be struck.   

I think these are dangerous times in dementia care however. We are fortunate to see examples of great practice at events like Congress but having worked in and out of nursing and residential homes over many years as a community nurse, inspector etc, we all know that dementia care is still not where it should be and poor attitudes and institutionalised practices still exist in the sector. Ever decreasing budgets, a decrease in the level of support provided by wrap around services and recruitment and retention challenges risk us taking a big step backwards. I don’t think this advert gets the balance right and could feed some of these negative stereotypes which doesn’t help the overall cause of people living with dementia, many of whom will move into care. We need those caring for them to get a consistent message about how valuable people are at every point in their illness and that their value doesn’t diminish over time. 

Many of us work tirelessly with great passion and commitment to change these views so it is extremely upsetting that this advert undoubtedly unintentionally, undermines this hard work. I was dumbstruck when I saw it on TV. 

Thank you for giving people an avenue to express their views.   

Aileen B

Having watched the advertisement that Alzheimer’s Society have issued I was deeply shocked – although this was an accurate depiction of what family members go through during the life of supporting a person living with dementia this is a truly scary depiction which people who have concerns regarding a loved ones memory issues will see and fail to seek the correct support, diagnosis for fear “I don’t want that for my family or loved ones”. 

I have supported both my Grandmother and mum through early onset mixed type dementia and know how this ends for them and for me – but if I had seen this advert then would I have pushed for a diagnosis? I don’t know. 

The treatment, knowledge and skill base of professionals has vastly improved over the years and this to me feels like a step backward. I know the aim is to get the funding and support through “shock” tactics but this for a person who fears (and yes it is fear) that a loved one or themselves may have dementia is not what they want to see – I think everyone knows the end results of this vicious disease – what we need to see more of is the improvements in advanced technology, treatments and support. 

Please get this STOPPED – since my mum died 15 years ago and my grandmother 37 years ago I know this is a genetic illness that is likely to affect me sometime soon – please let me see the positives to give me hope and not despair. 

Debbie Connor

I am a spousal caregiver of an English wife living with vascular dementia mixed with Alzheimer’s, presently in an advanced stage (probably 6e on 7-stage FAST scale, or Ruby on Teepa Snow GEMS scale).   My goal is to provide my wife a dignified life that maximises her opportunities to experience joy and avoid hospitalisation, such that she can pass with dignity at home. At present my wife enjoys 132 hours per week of in-home nursing and caregiving.   And yes, there are many things that my wife can no longer do: (practically all executive functions); and frequently she asks to go “home” and does not recognise me.  We can still go for brief short walks outside, she can smile beautifully still; and even though she does not always recognise me and sometimes looks at me with empty eyes, she still enjoys cuddling with me to watch TV and sleep and frequently tells me spontaneously “I love you 🥰.”  It is not the life I envisioned when we married over 35 years ago; and it is still a life worth living. 

Like many I am appalled by the UK Alzheimer’s Society “The Long Goodbye” and its dehumanising of people living with dementia.  Also like many, after my wife’s diagnosis I was relieved partially and also left alone with zero referrals or help from medical professionals in Colombia where we live. I had to educate myself and learn how to enter my wife’s world and deal with difficult behaviours. I look to government and nonprofit organisations for support as a care partner, and for me the resources of Teepa Snow and her Positive Approach to Care are invaluable. 

Perhaps there are not many organisations in the UK focussed on helping people living with brain change to live a more fulfilling life, and if so that is sad.  I would encourage the Alzheimer’s Society to investigate the work of the Michigan, USA based Dementia Action Alliance which seems dedicated exclusively to helping those living with brain change. Check out and also for a different perspective. 

There is no need to “shock and awe” to raise awareness of dementia with a campaign that stigmatises and dehumanises people and perpetuates stereotypes.   The UK Alzheimer’s Society should apologise and retract “The Long Goodbye.”   They have not earned my sympathy nor support. 


Jeffrey C 

What the video describes is some families experience and it is true and well documented that bereavement is a long process for people living with dementia. For education and debate it is useful but it seems to me to be a misjudgement as a public health message.  

Elizabeth Collier   

Thanks for sharing a response to this ad campaign. 

I have had a discussion with my team around this topic and we discussed how this ad is so damaging to the work we are promoting for people out in our communities. We have a number of people referred for support who are in denial, won’t access a diagnosis and won’t entertain a conversation about their memory worries due to numerous reasons, but with this advert perpetuating negative attitudes around dementia, this will drive people further away from really talking about dementia or even accessing the right support. Our team works so hard to understand people’s challenges and present solutions to making the day to day lives better for people and present the message that you can live well with dementia, albeit that they will experience ups and downs through this incredibly challenging disease. 

It was hard to see such a negative advert that will have a negative impact for years to come I believe. 

Isn’t it time to make a change and stop these campaigns damaging the hard work we are doing? I would think so 

Alex Fleming, Sandwell 

I’m a carer in a home for the elderly, where I’ve worked for five and a half years. I find this advert extremely negative and unhelpful.  

Dementia is indeed a cruel illness that unravels a person but to equate that with death is to write off the living. 

Someone can forget their son’s name or mistake their daughter for their aunt but no one ever forgets what it is to love or that they have been loved. 

Dementia affects everyone differently but even those most afflicted experience moments of lucidity and joy.  

As a mind deteriorates, it’s important to look for ways to engage meaningfully rather than lament what can no longer be.  

As a person’s world shrinks to the confines of their home, it is vital to maintain loving connections. 

Your mother may no longer be able to prepare her legendary roast but you can still share a roast dinner with her and bring her a favourite drink. Even if she can only eat soft foods, you can still serve them to her on her best plates. She may no longer be a fashionista but she may still enjoy wearing bright colours and looking at photos of herself as a young woman. 

Some days, she may look straight through you when you visit and then, later, after you are gone, may tell her carer a story about you because you are locked deep in her heart. 

Be patient, sit and hold hands, tell stories, sing old songs, hug, smile, just be there quietly. 

I have learnt that while life is fragile, every moment of it is precious right until it is extinguished.  

Barbara Higham, Ilkley, West Yorkshire 

It has been a few weeks now since the Alzheimer’s Society launched the video based around the message that ‘people with dementia die again and again and again’ 

It has been concerning to see what has unfolded in recent weeks because of this advert.  

It has caused a lot of distress, anguish and fear, and has polarised people who all feel strongly about dementia into different groups who are now fighting each other and undermining each other’s experiences and work.  

We have seen ideas and words used to describe people with dementia that we have not heard for decades. In short, there has been a lot of collateral damage. To read some of the comments on social media, one would imagine that those who promote ideas for living well are utterly delusional about what might lie ahead. On the contrary, everyone with whom we work has scars on their back from dementia – and from the stigma that goes with it – something which this advert will not help with, and in fact makes much, much worse. 

The main problem is not to be found in the words of the carer in the advert, but in the voice of the narrator that takes over towards the end, reminding us that “people with dementia die, die and die again.”  

This is a critical line which is spoken on behalf of Alzheimer’s Society. It shifts the position that ‘people with dementia die again and again’ from the experience of the son in the advert to that of Alzheimer’s Society. It changes the message from a carer’s perspective to, in the words of one of Alzheimer’s Society’s tweets, ‘The Unvarnished Truth’.  

We suggest that the story in the advert is not THE unvarnished truth, it is AN unvarnished truth – but by putting those words into the mouth of the narrator, it becomes THE truth, especially in the minds of the target audience – those who know little about dementia. 

Since the advert launched, we, and many of those with whom we work (and with whom the Alzheimer’s Society have worked) have come under sustained attack on social media for sugar-coating dementia. Protests at the impact of the advert been dismissed as overly dramatic or even opportunistic. The same attacks have also been made upon carers who voice their opposition, or who have said that their experiences were different. 

The Alzheimer’s Society argue that the message of the advert is not meant literally, and that it is a metaphor……and yes, of course it is a metaphor, but a metaphor for what? For loss? For social death, for death of self, of one’s place in the world, of one’s identity? Unfortunately, people hearing the advert are not given a 16-page guide explaining the meaning or the rationale. All many have heard is that they are dead. Metaphorically of course. 

We have tried really hard to be balanced in everything we have said publicly about this advert, and in reaction to people in the DEEP network. When we invited DEEP groups to send their comments in for us to collate to send to the Alzheimer’s Society we made it very clear we made no assumptions about how people would feel about the advert.  

There were a handful of people who felt favourably about the advert, and many who didn’t. For ease, we categorised people’s comments. Many people talked about the lack of balance in the advert and the potential to deepen a stigma which is already pervasive. However, by far, the majority of responses report fear, sadness, and distress.  

These were comments mostly from carers of people with dementia. 

We have seen very visceral (and sometimes very concerning) reactions, to the advert, across social media platforms from carers and people with dementia. These include at least two reliable reports of people with dementia expressing suicidal ideation as a result of seeing the advert. 

So our question to the Alzheimer’s Society is this: 

Can you, an organisation that offers help and hope to people with dementia and carers, justify any collateral damage to part of your constituency to further your message?  

We know that Alzheimer’s Society has an unenviable task to be there “again, and again, and again” for all people with dementia and carers at all stages of dementia.  

But this advert undermines its work and funded research that has driven work to challenge stigma, increase awareness, encourage diagnosis and support people to live as well as they can. 

Alzheimer’s Society is a large and far-reaching organisation. The framing in this advert will influence how people with dementia feel about their diagnosis, how families think about dementia and how the dementia sector treats people with dementia, for decades. 

We have two simple suggestions:  

  • Edit the very end of the advert so that it is not Alzheimer’s Society stating that people with dementia ‘die, die and die again.” 
  • Engage the dementia sector in discussion and explanation. We, therefore, encourage Alzheimer’s Society to look at the offer made by Dementia Community to use them as a conduit to engage with the sector.  

We hope Alzheimer’s Society receives our perspective in the spirit in which it is delivered – as we all know that it is better when we understand each other and work together. 

Innovations in Dementia

Like many people, I wear two dementia hats, I am a specialist dementia nurse and I also experienced being a carer for my mother who lived with young onset dementia for 17 years. When I watched the advertisement, The Long Goodbye on television; it shocked me on both fronts, as a nurse caring for people with dementia and as a daughter who loved and enjoyed her mother’s company during the 17 years of her disease. My mother was diagnosed with dementia in the 1980s and then the narrative was overwhelmingly negative; I remember the sense of dread and despair when she received her diagnosis; largely because everyone told us how hopeless it all was. There were hard times, but there was also lots of love, laughter and three small boys who grew up loving their Granny as she was. 

This awful advertisement is redolent of the dreadful AIDS adverts of the 1980s, dramatic, frightening, inaccurate and depressing. I understand, as with the AIDS campaign, that the organisation is trying to make an impact; but at what cost? How would it feel to return from the memory clinic with your new diagnosis, switch on the TV and hear that you are going too ‘die’ over and over again? To see weeping relatives, grainy films of childhood and the overwhelming sense of loss and burden. 

For me, the message from this advertisement is clear, a diagnosis of dementia makes you a non-person, not valid, not even really alive. What a terrible, hurtful and untruthful message. I feel saddened that we are seeing such a stigmatising campaign in 2024. 

Jo James, Consultant Nurse 

Thanks for your statement 
My Mum has recently been diagnosed with Alzheimer’s dementia. I can only imagine the emotional impact that this ad will have on her. She is very aware and anxious that things are not right. The significant anxiety and depression she is already experiencing will only deepen on seeing this. 
Jane Lawson

Just a short note to express my concern at the new dementia advert. I have delivered lots of dementia friends sessions over the years and reinforced the positives of ‘living well’ with dementia. This advert provides no hope for either the person with dementia or their oved one’s.  

Please re-think this!  

Thank You  

Jackie Marsh 

Thank you for speaking out about this advert. I have worked with people with dementia for over 30 years, and was lucky enough to be one of the first trained in Dementia Care Mapping. 

I have felt so angry after watching this advert.  

The Alzheimer’s society say they worked with families and carers to make this advert, but what about people with dementia? They seem to have no agency. People with dementia have had to fight for others to recognise that they’re still people, albeit people with specific difficulties, especially with communication, planning and perception, but our job as carers is to enable, not to take away their voice and tell them they are as good as dead. 

This undoes years of work helping families understand behaviour, understand what people are trying to express, validate the emotional journey of the person with dementia. 

 Its “a hard watch” (their response to my raising these points on X/Twitter ) because we see a family who haven’t been helped to understand her behaviour. We see a woman judged on whether she is still a fashion queen, who can cook a meal, we see a husband or son feel unrecognised because her perceptual/recall difficulties are unexplained. We see a woman set up to fail rather than a woman helped to find meaning and purpose. And it’s so depressing after all these years of continuing to confront these stereotypes. 

Vicky McLean  

The National Activity Providers Association (NAPA) fully supports the sentiments expressed by Dementia Community regarding the recent Alzheimer’s Society advertising campaign. Equating living with dementia to enduring multiple deaths is deeply concerning and perpetuates harmful stereotypes. We agree that such comparisons undermine the humanity and dignity of individuals living with dementia. 

While we appreciate Alzheimer’s Society’s efforts to raise awareness about dementia, we are disappointed that the new campaign fails to reflect the reality of living well with dementia. By focusing solely on loss and despair, it disregards the hope, meaning, and purpose that individuals with dementia can experience. 

As an organisation committed to promoting wellbeing and recognising the strengths of individuals living with dementia we urge Alzheimer’s Society to engage in consultation with key sector stakeholders to ensure a fair and diverse representation of the experience of dementia.  

To discuss this response further contact: 

National Activity Providers Association

Many wise and emotional words have been expressed by people with lived experience and professionals and academics who seek to support our well-being about the extremely upsetting and disappointing campaign being mounted by the Alzheimer’s Society. 

  1. If the advert and campaign were designed to raise awareness then awareness of what – that dementia is solely the late stages and about dying and not living, that it is all bad and horrific – then they have succeeded. 
  2. Is it about upsetting those and making them guilty for trying to live life as fully as possible with a diagnosis or caring for someone, then they have succeeded. 
  3. Is it about dividing people within the dementia community then again well done they have succeeded. 
  4. Is it about scaring people who may previously have come forward to have checks and assessments, to then be diagnosed and supported – then yes they have succeeded. 
  5. Is it about making an Ambassador of the Society for the past 9 years seriously consider if I can continue and support a charity doing harm rather than good with this campaign then yes it has succeeded. 
  6. Is it about convincing the Government that Boris Johnson was right to write off older people as not mattering during the pandemic then yes again it has succeeded. 
  7. If the campaign was designed to generate greater reliance on peer support rather than what the Society can provide then it has succeeded 
  8. Is it about demotivating and worrying the Society staff seeking to provide support and constructive, positive relationships with those currently living with dementia, then it certainly has succeeded 
  9. If it set out to make my wife turn off the TV and radio and walk away like very many others every time the ad appears or the word Alzheimer’s Society appears then it succeeded 

Well as an ex-teacher that makes this assessment 100% = well done Alzheimer’s Society – but my added comment is “Must try harder and you could do better!!” 

Keith Oliver

That advert breaks me. Every time I see it I have to switch it off it’s even on ITV also social media and radio. 

Yes, Alzheimer’s can be hard, dark and unfair. Surely though this campaign will scare people off going for a test and those waiting for results or just confirmed must be frightened. 

In first stages of dementia even before diagnosis, people are still aware of things and this will frighten the heck out of them. 

My dad was diagnosed in 2017 but took us a good 3 years to convince him and my mom to get dad diagnosed, because dad was scared and mom too of the outcome. As both my nan and grandad were diagnosed with Alzheimer’s. 

Turned out my dad had Alzheimer’s and vascular dementia. He was at home for as long as my mom could remain looking after him. During the process my mom had a breakdown and ended up with mental health issues and in a mental hospital. We then had to care for mom & dad, eventually dad going in respite, staying in care for my mom own health really and because he became too aggressive. 

Through all of dad’s journey we had some good days, he made us laugh and his love for Elvis and Aston Villa gave us joy and dad too. Looking through photo albums of his trips away with mom to America. 

There is always a person among the diagnosis. They do not die over and over again, my dad died once in November 23. The grief was real. He died of sepsis because of his catheter and pneumonia.  Until June 23 he was walking around in his own world but then the catheter came which was his downfall. He just celebrated his 80th birthday when he died. 

The videos and pictures of his journey represent the good and the bad times. However, he died once. 

I’ve done bike rides raised money for Alzheimer’s Society, money from dad’s funeral was also sent. 

Why can they not use money to tell people how to get support, continuing health care, support for carers in the advert. 

I will continue to raise funds for Dementia UK which again I have previously, I will not support Alzheimer’s Society any longer. 

They have not been there for me again and again and again, how they don’t hold my dad’s hand. 

Kind regards 

Vanessa P – still grieving 

‘The Long Goodbye may be true for caregivers, but it is not for we who live with dementia. We do not die repeatedly. We live on, making the best of our lives. We want our family and friends to enjoy our company and not dwell on our disease. We are still the same person, if incapacitated in some ways. Of course it’s hard for caregivers, and they do need far better support. But Alzheimer’s Society has diminished us to being dead zombies from diagnosis on. They have undone all we have worked for for years.’ 

George Rook, Chair of LEAP, the Lived Experience Advisory Panel, Dementia UK, Chair of the Shropshire and Telford Health Economy Steering Group 

I so agree with you that the advert is unhelpful. 

When I first saw it, I couldn’t believe it had been produced by such a well-respected organisation. 

It may well be that some bright-spark advertising executive thought a hard-hitting approach might gain notice and garner support.  

Unfortunately, the negative message, comparing various stages of a progressive disease with death, seems very unhelpful to those of us who value and work hard to support people living with dementia.  

The approach at MHA to supporting those living with dementia is grounded in the work of Tom Kitwood and the Bradford Dementia Group: our person-centred care assumes that there is a ‘person inside’ whom we treat with dignity and respect. To label the stages in the progress of Alzheimer’s disease as ‘deaths’ is, in my view, to deny that person the value of being a precious, living human being. 

Peter Slee, Chaplain, MHA

I think this ad was produced to attract shock value for people who sometimes need a wake-up call to what carers are feeling.  

Carers do go through anticipatory grief but from my personal experience of 7 years caring ending in my husbands death last October I never once thought of him as a dying man. 

It seems this campaign is projecting some of society’s fears onto the general public.  Perhaps even some people who occasionally see a loved one or other friends may feel like this as there are sometimes marked decline in a person when the visits are infrequent.  However for those who live daily with a beloved spouse, partner or friend their only thought is getting on with life – certainly not death. 

I experienced births!! My husband who never sang or danced joined a choir and sung his heart out!! I loved that side of him that did exist but that he had hidden. He hugged strangers and became a friend to many new people – he experienced life in a different way. All of his qualities did not die – just some things he was unable to manage anymore and so these were replaced by other things he could.  Peter was a vibrant albeit slightly more fragile person up to his actual death.  He remained very much alive and more so … living his every day with as much joy as possible. 

So for me I think the advert is for the unenlightened audience … if that is the target and it helps raise money buying into people’s fears it may succeed. 

Helen Seager 

The recent change in tone is difficult to understand. A step back to a time when a person living with dementia wasn’t only devalued and dismissed, their capacity to adjust and achieve disregarded, but to a time when there was a misguided belief that there was no person to appreciate for they were seen to have disappeared. Taken away by disease. How wrong we were. How can the inspiring stories of, and encounters with people living with dementia be ignored, for only by doing so can destructive attitudes be resurrected. The journey to affirm the personhood of people living with dementia continues. 

Graham Stokes, Director of Dementia and Specialist Service Innovation, HC-One 

Jesus wept – what a hugely misguided campaign. 

David Truswell, Dementia Alliance for Culture and Ethnicity 

I can see what they are trying to achieve with the advert – in some respects you do feel you are gradually losing your loved one, but the way it’s portrayed within the ad is going to be terrifying to anyone going through diagnosis, and completely unacceptable for many people currently living with the condition. The message the advert gives is going against everything the society itself was trying to achieve through the Dementia Friends work where we strive to give hope by focusing on what people can still do rather than dwelling on what they can’t. 

Jane Ward, Dementia Friendly Hampshire and member of the board of Dementia Community 

I don’t tend to use my profiles for much other than mindless scrolling nowadays, but this morning I came across something that has boiled my blood and forced me to write this down. 

As I was listening to the radio today, a new ad campaign for the Alzheimer’s Society played … and while I am an active supporter for awareness and fundraising – this new campaign is a slap in the face to everything that we have been fighting for since my Mum’s diagnosis. 

The advert, in case you’ve yet to see it, tells a story of how a woman dies bit by bit, focusing on everything lost such as the love of fashion or the ability to cook a roast. 

This is directly against the hundreds of people I have told “You can live well with Dementia” over the years and focuses solely on the lose and grief. 

Yes, all forms of Dementia are vile and hideous diseases that take things and people. 

But a diagnosis isn’t the end. There is life. My Mother is living proof. LIVING proof. As is the amazing lady in this video. 

A campaign focusing on the pain and grief, whist a valid experience, is not what my Mum wants people to see – certainly not people who are on the scary precipice of a diagnosis. What can come of making this period even scarier? 

The advert finishes stating that people with Alzheimer’s die again and again and again so the society is there to support them again and again and again. 

Yep, that pain you’re feeling as your loved one loses a part of who they are – that’s going to keep happening over and over again – but don’t worry, because we’ll be here every time. 

How is that reassuring? 

How is that positive and supportive? 

What’s worse is that this ad was shown to focus groups and committees of people WITH dementia! All of whom told them it would rewind the past 10 years of positive work, of taking away the fear a diagnosis would bring. That it would be an insult and a slap in the face to the years of interviews and documentaries. 

The thousands of Dementia Friends sessions that are still being run – all are questioned as soon as the Alzheimer’s Society decide that the best way of raising awareness is by playing on the pain and suffering. 

I still see articles saying someone is suffering with rather than living with dementia and flinch. 

Today, I will write to Kate Lee, CEO of the Alzheimer’s Society and pass on my disgust. 

Please join me. Let her know that this is not good enough. That this doesn’t represent people living with dementia or those effected by dementia. That we choose to fight. We choose to live. 

Abe Watson, whose mother has dementia.  She is an ambassador for the Alzheimer’s Society and has most certainly not died

Thank you for this opportunity to comment on the Alzheimer’s Society advertising campaign ‘The Long Good-bye’. Thank you too for your support in objecting to such negative messaging and the damage it has caused. 

I am a person who is living with Dementia and I am able to say that seeing this advert was devastating for me, but just as importantly it was devastating for my family. It is certainly something that has seriously damaged my mental health, as well as that of many others Living with Dementia and their Carers. Many people, myself included have withdrawn their support for this once respected charity and are walking away. 

I have volunteered for the Alzheimer’s Society for several years doing considerable amounts of work for them, some of which has been acting as a keynote speaker, government lobbyist, Dementia Friends Ambassador, staff interviewing, Dementia Voice, Consulting to produce a Volunteers Induction Pack and teaching. As a result I am the only person who has received two of their Dementia Hero Awards, an individual Special Award given to the best Staff or Volunteer for 2019 and a member of the Wales Ambulance Service Trust who won the Team Award in 2023. I have now given up all enduring support for the Charity due to its Negative Campaigning. 

They have broken every recommendation regarding the messaging for Dementia Care, even their own Charities founders, when it was established in 1979. They all believed passionately in positive messages of Compassion, Empathy, Care and Support to people living with Dementia and their Families to as they once advocated ‘LIVE WELL WITH DEMENTIA’! 

Wide condemnation of the Advert by the NHS, Care Homes, Palliative Care Experts, Policymakers, other Charities and their own Staff / Volunteers has lead to the Ad Campaign being investigated by The Advertising Standards Authority who have been swamped with complaints and therefore fast tracked.  

Everyone who is involved with those who are living with Dementia must remain POSITIVE in their messaging, support and care. It is vital that you consider the things we CAN DO and help further their continuation, rather than simply looking for lost skills. It is vital for us and our Families that we are helped to live better lives.  

Let’s address ‘the elephant in the room‘, though, which we all know about, that taking away hope and replacing it with fear, anxiety and depression, can lead to Suicidal Thoughts and even Suicide, most notably Robin Williams who did just that after his diagnosis of having Lewy Body Dementia. There are many others that we could mention here. 

Dementia awareness has never been under more of a threat than it is right now. We are returning to Stigma, Discrimination, Myth, Fear, Anxiety, Depression, Negativity, Loss of Dignity, Loneliness and Loss of hope!  These images which for years we have worked to dispel have been resurrected. This has been a very dangerous message for those who have received a diagnosis of Dementia or considering an early one, as the NHS advice and our many Researchers hope will happen. This is an image, that once seen and placed in the mind cannot be easily erased by those on their ‘Dementia Journey’ or their families. 

We are yet to see an apology for their Ad Campaign THE LONG GOODBYE, where those of us living with Dementia are described distressingly as ‘dying again and again and again and again’, which many don’t, even though so many thousands of people have been dangerously and irreparably harmed by it. Until an apology is demanded by the ASA I doubt very much if we will receive one! 

I would like to end my forthright thoughts on this advertisement, by endorsing a positive personal attitude to my Dementia, honestly believing that we are capable of achieving happy and productive lives, with the love of family and friends, supported by empathetic, kind, compassionate, positive and experienced Carers, who spend every hour of their working day to make sure that this is possible.  

Andrew Woodhead BA (Hons), MSc (Econ), MA /LLM, PhD, FInstD 

Dementia Voice, Global Dementia Ambassador, Marie Curie Supporter, Dementia Friends Ambassador, Member of the Heath Hospital Board of Studies, Cofounder Lleisiau Dementia, Advisor to PHW / SCW / Improvement Cymru, WAST Trainer, Member of the UK Libraries Steering Group for Reading Well, AHP Advisor, Coproduction Consultant, Author, Palliative Care Researcher, University Lecturer, Post Doctoral Research Asst & Motivational Speaker  

I disagree with the majority of comments here. My Dad was diagnosed c. 2 years ago. He DOESN’T die again and again – at age 90, he LIVES life as full as he can. The summer before last, he rebuilt my garden wall. Last year, he re-pointed my full patio and repaired a leak on his own garage roof. On a weekly basis, we visit Butterflies Memory Loss Support Group and, despite his own diagnosis, he goes around and chats with all the attendees. He still plays his mouth organ, which he used to play during his National Service in the 50s… he’s also hoping to learn to play simple chords on the guitar. He still has a great sense of humour – often joking about his condition. 

I believe that your video concentrates on all the negatives of the condition and none of the positives. It shows no hope. It scores a shocking own goal. Furthermore, it leaves me questioning the value of your organisation. 

Not all carers or loved ones wish to wallow in the downside; they want to see and enable people with the condition to LIVE life to the full for as long as they possibly can.

Kevin Young, sharing with us what he wrote on the Alzheimer’s Society Facebook page

I’m responding to your online article requesting views about the recent Alzheimer’s Society television campaign. As a carer for my mum who suffers from Lewy Body Dementia, I find their advert to be insensitive to the point of traumatising. I have submitted a complaint to the Alzheimer’s Society, but I’m not hopeful it’ll make any difference. I copy the complaint below for your information.

“I hardly ever complain, but I feel I must write to you regarding your recent television advertisement. Do you realise the harm you are doing by putting adverts in front of the many dementia sufferers, many of which are aware of their condition, and hearing ‘you die again and again and again’?  This is absolutely horrifying for my mum who suffers from Lewy Body Dementia. I am her son and full-time carer and this advert upsets her greatly every time she sees it. And as a carer, it makes me extremely angry that you would use this emotionally shocking approach to increase your revenue.  

“I’m sure you’ll try and justify the advert as ‘raising awareness’ and as valuable fund-raising…I’d like to make you aware that many thousands of dementia sufferers are cognisant enough to understand what you are saying and feel horrified by it every time it appears on their TV screens. As if the condition itself isn’t hard enough to cope with, for sufferers and carers alike, you decide to use shock messages like this and make it worse.

I implore you to think about the dementia sufferers and carers when you put together your advertising campaigns. What you have done with this advertising campaign, which we see day after day, is truly traumatising. We know how bad it is, we don’t need your shock tactics making it worse every single day.” 

Rob Young