Dementia friendly… or not?

puzzle pieceMany countries are focused on becoming dementia friendly. It should be exciting times for people with dementia.

There are large numbers of people in the Associations and Organisations advocating for people with dementia and their family carers, sitting around tables, inviting guest speakers to present at events and teach others how to make their organisations and communities’ dementia friendly, and seemingly taking the notion of communities being dementia friendly very seriously.

The UK have been working on being dementia friendly via projects such as the Dementia Engagement and Empowerment Project (DEEP) for over 10 years. Australia has been actively promoting the ideal for a few years now, with the theme last month for Dementia Awareness Month being Dementia Friendly Communities, a theme they will focus on again next year.

In 2014, we even saw the World Dementia Council set up, not specifically talking about dementia friendly communties, but focused on dementia now and into the future, but without a person with dementia in the committee.

As suggested, it should be exciting times for people with dementia, but without including people with dementia, it simply continues to stigmatize and isolate us. It is incredible that everyone would be outraged if this was done to Indigenous, gay or disabled groups, yet very few see it as wrong that people with dementia continue to be excluded.

In the work being done towards dementia friendly communities, there are two pieces of the puzzle that are often still missing;

  1. The internal Dementia-friendly Audit that needs to be done, inside the very organisations advocating for dementia friendly, and
  2. The full inclusion of people with dementia.

To date, there are few if any truly dementia friendly Alzheimer’s Associations or Organisations. They generally are not fully inclusive of people with dementia, rarely have them on their Boards, and the consumer committees that have been set up to provide a consumer voice, are predominantly made up of carers, not people with dementia.

It is however, thrilling to announce that Alzheimer’s Australia has listened, and more importantly, taken action, and is now employing a person with dementia [Kate Swaffer] to work with them on their dementia friendly initiatives. No longer about us, without us. Let us hope this sets the trend for other countries.

Things are changing, as the Scottish, EuropeanAustralian, Irish and now the Japan Dementia Working Groups, made up entirely of people with dementia have set the trend. The Scottish group was ground breaking, and set the example of what could, and should be done. But not having people with dementia, at the table, at every single meeting about them, about what their needs are, and being part of all of the conversations, cannot be dementia friendly.

There is no way any country or community would be holding meetings or running events, about what an Indigenous, gay or disabled friendly community is, without a lot of those people being involved and present.

Of course people with dementia rely on the support and services these organisations can provide, but not to their detriment. Often we are ‘used’ in a patronising and tokenistic way, in order to say we have been included.

One person giving a 10 minute presentation, cannot possibly represent the 44,000,000 peoiple living with dementia around the world.

We are used to help with fund-raising, reported as ‘sufferers’ and ‘victims’ in order to elicit sympathy and support through fundraising for research. Research still mostly goes into finding a cure; even though some researchers openly and publicly admit they are further away from a cure than they were 10 years ago!

Change is in the air and as the voices of people with dementia become stronger and louder, and more unified, through the work of these consumer Dementia WorkingGroups and Dementia Alliance International we will spread our wings and use our voices to ensure our basic human rights are being met. Dementia friendly must include us, and the organisations supporting us, must weed their own back yards through internal audits (not self audits, but audits done by people with dementia) before they start advocating and preaching to others what dementia friendly means.

Without including people with dementia in the projects and discussions about dementia friendly communities, no organisation or communioty can make the claim to being dementia friendly.

Editor: Kate Swaffer
Copyright: Dementia Alliance International & Kate Swaffer  © 2014