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;
- 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.
- 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.
- 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.