Dementia Alliance International is currently working on writing and producing a number of publications, including on what the Dementia Friendly Communities or Dementia Friends campaigns actually mean to people with dementia.
Small actions do count and everyone can make a difference.
Being dementia friendly its more about being inclusive of everyone, which therefore also means equal access.
It means so much more than being friendly
From the perspective of people living with a diagnosis of dementia, it is less about being friendly, and so much more than awareness of what dementia is. It is about access to our communities, as citizens, in the same way any other person with a disability is supported to live.
It is more than professionals and interested others (without dementia) working together to make OUR community more inclusive and accessible.
- Being incusive
- Human rights
- Disability rights and access to the CRPD
- Non discrimination
- Full inclusion
- Our right to citizenship
- Enabling Environments
- Support for disabilities
It means including us.
By not including us, the stigma, discrimination, myths of dementia and isolation are continued, and often, by the very organisations and service providers claiming to advocate for us.
Not one or two of us, but many of us, and this is why:
- People without dementia cannot really know what it means to live with dementia; we are the experts of the lived experience
- People with dementia can inform people without dementia on what it actually means [to us] to be dementia friendly
- So that is is no longer ‘about us, without us’. This has become a catch phrase, a tick box for organisations, in the same way person centred care is in care plans, but not in action
The dementia friends campaigns being run by advocacy and other organisations need to educate, not just raise awareness.
They need to be respectful and empowering to people with dementia, and very importantly, they need to promote, and use, respectful and empowering language.
If they engage with the media, and ask people with dementia to engage with the media, they must insist on the language being used to be aligned with the most recently updated dementia language guidelines, which can be found here, and without using them, the media, and the organisation, will never be dementia friendly.
Dementia Friends campaigns must not focus on our deficits
If our deficits are what are focussed on, then we will never transform the way the world thinks, acts and talks about the condition.
Therefore, these campaigns, all campaign material, and campaign media, must never focus on our deficits, but instead on supporting our disability and human rights.
Our disAbilities must to be fully supported, and employing us to work on the initiatives is also important. After all, if we were setting up an Indigenous or LGBTIQ friendly community, we would employ people from that cohort.
Any organisation, wanting to work on something new, would contract or employ the experts of the lived experiences.
People with dementia are the experts of the lived experience, and would [and should] significantly and positively impact this work.
In reality, especially in the earlier stages, people with dementia are simply living with disAbilities, that can be supported, in the early stages of the disease. Yes, it is a terminal illness, and yes, it may not be a fun experience all of the time, but it is possible to live much better, for much longer than the expectations and perceptions.
We still have a lot to contribute to society, and our own lives.
As suggested in a recent blog, there are many groups of people working on their own Dementia Friends campaign, 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 talking about ways to support us better to live well, and to live in our communities for longer.
Alzheimer’s Disease International have a Global Charter I Can Live Well with Dementia. Therefore others must start including us in this work; it is personal, and not including us simply means we have less chance of ever achieving this goal, it continue to be about us, without us, and worse, it contribute to the ongoing experience of stigma and discrimination.
If it’s about us without us, it is not friendly.
Dementia Alliance International now has representation in more than 49 countries, which means we can ask members to assist in this work at a global and at some local levels, but we don’t reach all regions. Therefore, each Alzheimer’s advocacy organisation and Dementia Friends Working Group has the ability to set up and support their own Dementia Advisory Group/Committee, to properly guide, lead and inform the work being done.
What’s missing in the Dementia Friends campaigns?
Some key things currently missing in the dementia friendly communities work and campaigns are;
- Each country, each city, each community working on becoming dementia friendly, needs to set up their local, regional, city or 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 start employing or contracting people with dementia, or an organisation like DAI, to work on their dementia friends campaigns. People with dementia should be treated with the same respect any other consultant is, and paid for their expertise.
- They must also themselves, be audited on whether they are operating within dementia friendly guidelines themselves, and being audited by people with dementia is the first place to start.
Join the global movement
We ask that everyone join the global Inclusive Communities movement, start your own local, regional, city or country Inclusive Communities campaign, and support people with dementia, but please, always fully include us in this work.
Each country, each community, needs it’s own Dementia Advisory/Working Group of people with dementia, to lead, guide, and properly inform this work.
And finally, it should not only be a marketing tool for organisations to promote themselves, which is what person centred care very quickly became and often has not moved beyond that into practice.
Copyright: Dementia Alliance International 2018