What’s missing in the Dementia Friends campaigns?

about me without me 3Almost daily I read or hear about another Dementia Friends or Dementia Friendly Communities campaign.

Groups of people working in the sector, getting excited about what they might be able to achieve, how they might be able to improve the lives of people with dementia and our families and support us better to live well, and to live in our communities for longer.

It is exciting times for people with dementia, or at least it should be.

However, if it is about us, without us, it is not dementia friendly. 

I have implied this is not such an exciting time for people with dementia, because, still, we are not being fully included in the work and conversations. Maybe a few individuals here and there, but often, only one or two people on a large working group or committee of people without dementia.

It has been said by many; that if you have met one person with dementia, then you have done just that. You have met one person with dementia. In no way can one person represent 47.5 million. That is just as true for all groups.

People with dementia should be leading the work and conversations and guiding people who do not have dementia, about what is and what is not dementia friendly.

Just as I have no idea what it’s like to be an Aboriginal or a homosexual person, and cannot possibly understand their lived experiences and issues, so it is the same for people without dementia. They cannot know what is and is not dementia friendly. They can draw on evidenced based research, anecdotal evidence, and ideas they think might be helpful, but that does not fully capture our lived experiences. Only people with dementia know what they are.

No ill intent is meant by any of the people without dementia working on the Dementia Friends campaigns, and of course, they and all people working with the best of intentions, but the end result of them releasing things such as a video that almost only focuses on the increasing deficits of a person with dementia, is to many people with dementia highly offensive.

The Dementia Friends campaigns around the world, as I see it, are missing some key components and although I am currently working on a detailed article about dementia friendly communities and campaigns, and hope the following will inform the great work being done.

The most important part of the work missing, is the numbers of people with dementia. Using the same advocates, to inform the work of another region or country, is not appropriate, as each community has its own challenges and culture. It is also unacceptable, as each community or city or country is different.

Dementia Alliance International now has representation in more than ten countries, which means we can ask members to assist in this work at a more global, and some local levels, but we don’t reach all regions.  Therefore, each Alzheimer’s advocacy organisation and Dementia Friends Working Group needs to set up and support their own Dementia Advisory Group, to properly guide, lead and inform the work being done.

Some key points missing in the dementia friendly communities work are listed here;

  1. Each country, each city, each community working on becoming dementia friendly, must set up their local/regional/city/country Dementia Working/Advisory Group. This is because every single community is different, and because the work must be led by people with dementia, not as it is now, which is by people without dementia.
  2. To be dementia friendly themselves, advocacy organisations must, I believe, start employing people with dementia to work on their dementia friends campaigns, or at least treat them like professional consultants and pay for the expertise, in the same way every other consultant is paid. They must set the example to other organisations.
  3. They must also themselves, be audited on whether they are operating within their own dementia friendly guidelines; being audited by people with dementia is the place to start.

The motto, nothing about me without me, has been used so often for so long, it has become almost meaningless, and sadly, just like person centred care, is barely more than a tick box.

13 thoughts on “What’s missing in the Dementia Friends campaigns?

  1. i also think cose at the minit i can sort of explain, people around me are staring to be more under standing if i say no i dont need to explain very often but i still fee lmore at ome with either my self or otheres like me the sing for the brain is good and one. of the ladies in charge is going to try get our group in to carecenters were people with problems can see how the can bepart ofa group to help them hope i made myself understand here

  2. Thank you for these words, Kate. However, as someone who does not have dementia, but who is working tirelessly with people with dementia to ensure their voices are being heard, especially where those people do not feel they have the time or the energy to be part of community planning meetings or other advisory panels, I feel it is better to offer some representation than none at all.

    I strongly agree with your words though, Kate, that each community should be represented by people with dementia living in that community. I have been trying to ensure this be the case here in my own country. However, at last year’s national conference the words of 23 people living in one of our communities were ignored. The research that was carried out to seek their perspectives on what would make their community dementia-friendly were dismissed – in favour of your words, Kate. You do not live in my country.

    Their words and thoughts continue to be disregarded.

    I would appreciate your thoughts.

    Kind regards

    Karen

    • Thanks for sharing this with me Karen… I am rather shocked, which is an understatement. If you had 23 people with dementia speaking out for what they felt was important to them in their community, I cannot understand why my (or any other person with dementia’s) voice was the one listened to???? This is unacceptable, and I would be investigating it further if I were you. Would you mind if I sent you an email to communicate further about it? Best, Kate

  3. Thanks for this insightful blog, Kate. That quote from the late Prof Tom Kitwood, Once you’ve met one person with dementia, you’ve met one person with dementia, is a favourite of mine. Person-centred care requires a relationship between the carer and cared-for. There are no short-cuts.

  4. Pingback: What is dementia friendly? - Dementia Alliance International

  5. Kate. Well written. I have joined your fight for inclusion if only on a one facility basis. Could you talk about how to make the involvement more universal when you say yourself that “It has been said by many; that if you have met one person with dementia, then you have done just that. You have met one person with dementia. In no way can one person represent 47.5 million. That is just as true for all groups.” How then does one or two persons with dementia on a committee or at a conference represent the needs of the whole? I think another issue is for those of us without dementia to be able to know that the person with dementia is still able to cognitively share their needs. So in many ways the one seems to speak for the many who cannot speak. Respectfully, Michael

    P.S.Re-watched your TV appearance again. Moved. Especially felt the “Virtual Reality” segment was important and it answered many questions for me.

  6. Kate – this blog is truly an excellent guide for all working on dementia campaigns, strategies, videos, etc. It is written in such a way that it can be adopted as is at the beginning of any project and be used as a guideline all the way through its various stages. Ontario is just starting to begin work on its Dementia Strategy plan. ODAG is part of its Advisory Group. I will be sure the team receives this and push for its utilization. Thanks for writing such a thought provoking and immediately useful blog. As always… MB with big hugs!

The only thing missing in this global conversation is YOUR voice... Thank you.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s