Thanks to you all for making this petition effective. We couldn’t have done it without you. 

“As a daughter and carer, supporting my dad, who has dementia, I find these ads depressing and not representative of my dad's life. Nor are they representative of my oldest friend's life. She's achieved so much since her diagnosis and is part of a very active and supportive dementia community. Nor are the ads representative of my working life, pre-carer, in which I had a lot of fun with people living with dementia.”  One of the 1,790 people who signed the petition. 

I didn't want to do this work. I'd so much rather have been able to support the advertising campaign, and the Alzheimer's Society, who do wonderful work. Some people didn't agree with our feelings and thoughts; this was a piece of work which I did as a private individual, not as part of any organisation I'm connected with.

Here’s what’s happened:

1. 1,790 of you signed the petition, and many added their reasons for signing. 1,146 of you shared the petition to your friends and family. £848 was donated to Change.org to widen the petition’s circulation. You are people living with dementia, their carers and supporters, professionals, and others who cared. Far more people than I ever expected - I started the petition thinking there’d be a handful of signatures and it would all be over in a week. Little did I know.

2. Alzheimer Scotland, Dementia Community, Dementia Alliance International and the CEO of Sense (For people with complex disabilities) all made public statements with their own concerns about the advertising campaign.

3. A group of concerned people gathered. The petition became a campaign, and Carol Sargent, Kate White and Julie Hayden joined me in decisions and actions. This has become a strong team who have contributed in many ways. 

4. Alongside, there’s been a groundswell of unhappiness and distress caused by the broadcasts, and a wide range of work going on to try to achieve a more balanced representation in the media.

5. 235 people complained about the advertising to the Advertising Standards Agency (ASA). In the whole of 2023, only ten advertisements received more than this number of complaints out of thousands. The Authority set up an investigation into the complaints about the Long Goodbye Campaign for being excessively distressing, offensive and irresponsible.

6. The ASA investigated the complaints, and the advertisements were taken down. In the end, the ASA did not uphold the complaints and the Alzheimer’s Society are still not currently broadcasting the advertisements.

7. While the Alzheimer’s Society refused to receive the petition, in June there was an offer to discuss the issues, and Carol Sargent and I spent 90 minutes presenting our views to Alex Hyde-Smith, the Director of Income and Engagement. He personally apologised for the distress caused, and for not meeting with us earlier.

8. Leading this petition has been far harder than I ever expected. The process has been intense. On one hand, there's been so much support and interest. On the other, I’ve become more familiar with my thinking, feelings and actions being invalidated and dismissed. I've also heard from many people who find themselves in impossible situations. 

9. I’ve sometimes wanted to withdraw; but your signatures, your sharing of the petition with your network, your donations to Change.org and your comments, on social media, personal, and on the petition itself have all had a powerful effect. So has the sense of not doing this alone. There are many people working for change, making steps towards a different understanding. 

10. But there’s been an impact on me, and on others. That impact is still experienced by so many people living with dementia, of being invalidated and ignored. I'm sure that's unintentional, but there’s no wonder that so many people living with dementia withdraw and lose any expectation of being heard. 

11. I met people who have had no connection with dementia who were shocked and distressed by the advertising - we can only hope that they haven't gone away with yet more fear. 

12. Families supporting someone living with dementia can go through some very painful and challenging processes. The broadcast advertisement is clearly based on the real experience of one family; we’ve never disputed that. But to present it as if everyone had the same experience is misleading. The four campaigners on this petition have all experienced the challenges ourselves in the lives of our own close families and friends, and have a range of different experiences.

13. If there was enough understanding, care and support for the whole family, including the person living with dementia, we believe everybody could live better lives for longer. Some of the difficulties encountered could be significantly reduced, and we could all learn how to work together more constructively. Some of the very real challenges of dementia may well be down to the lack of skilled care and support available to families, friends and society as a whole.

14. People living with dementia can be creative, can learn new things, and can continue to live their lives. We are still ourselves, but have to adapt in different ways. After all, big changes happen throughout our lives, and we can learn from change. We believe that this needs be emphasised in public statements about dementia, so that there is a more balanced representation. That is how most charitable organisations represent their communities in their advertising.

We feel that now is a good time to move on, and use our energy to work on constructive, forward-thinking projects. For myself, I'm hoping to keep my head well below the parapet now! 

Our intention is to do what we can in these areas:

A. Promoting more person-centred, creative approaches to support people living with dementia and their families.                                                                                       

B. Supporting the many organisations who promote and support living your best life with dementia, for the good of the whole community. Finding more ways to work with others living with dementia and their supporters. 

C. Campaigning for better support for families, and a reimagining of dementia and dementia care.                                                                                                                     

D. Continuing to be open about our own experiences and understandings of dementia, to communicate our needs for change in any way we can. That's not just for us, but for the millions of people across the world living with dementia. It's for all of us, now and in the future as the incidence increases. 

We know we are not alone in what we believe. There’s plenty more work to be done which can benefit everyone in our communities, cut the long-term cost of care, and add to the overall richness of our society. Thanks to you all for your support and for caring. This petition has been a hard-earned achievement, which we hope can take us forward together. 

Feel free to share this message and respond. We feel this has been a positive contribution to the much needed process of changing attitudes to dementia, and enables a balanced discussion of the the critical support the dementia community urgently needs now and in the future.

Thank you one last time for your support of this petition. 

Maxine Linnell with Carol Sargent, Kate White and Julie Hayden.