Support: of, by and for people with dementia #DAM2015 Day 29

DAI-nothing-without-us

 

 

Very slowly, the world is coming to grips with the fact that many people with dementia can still live good lives. Yes, lives that are productive and where a contribution to society can still be made. It is Day 29 of World Alzheimer’s Month #WAM2015, and our membership os growing. As such, we need to accommodate new members needs.

Dementia Alliance International (DAI) is an organisation where we are living, and hopefully teaching this reality, and our members are encouraged to speak up for themselves, and to contribute as best they can, in any way they wish, and in spite of the varying and changing disabilities imposed on all of us by a dementia. DAI has only been operating since 1 January 2014, but we now the peak body for people with dementia, through collaboration with Alzheimer’s Disease International.

Indeed, we are also bringing to reality, the “nothing about us, without us” slogan.

DAI Membership is growing

Membership of people with dementia in Dementia Alliance International is growing, and therefore, the services and support groups we currently provide have needed to grow two match our increasing membership numbers. Of course, this may mean, sometimes what we have to offer, unfortunately may clash with another organisations services.

Life is like that, but if we are to properly serve our members, we have to hold things at times suitable to them, not us. Naturally, some things we plan may not always suit everyone. It is also why some of us get up for meeting at 5am, or stay up for late meetings at midnight.

DAI is not in business, nor in competition with anyone else. It is, quite simply, an advocacy and support group, of by and for people with dementia. And as our membership continues to grow, we could end up with support group meetings in the same country or region, all being held at the same time, if that is when members want them.

This is especially likely as  the rate of diagnosis is going up at one new diagnosis every 3.2 seconds, and as we have placed a limit on numbers attending support groups at a maximum of 12 people.

DAI is unique

Our uniqueness is that all of our services and support are provided by people with dementia, for people with dementia, whereas other organisations are owned and run by people without dementia. This can be a weakness for us, but it is also one of our strengths.

DAI was set up, in part, because the organisation knows as DASNI, which was originally for people with dementia, was taken over by people with out dementia, and it now offers little for people with dementia, and in fact 2/3 of membership are family care partners.  This is ultimately, the main reason DAI was set up. People with dementia want to run their own race, and DAI did not spring from DASNI, but rather, because they were not necessarily serving what a group of us including the late Richard Taylor, felt were the real needs of people with dementia. We wanted autonomy.

There are many organisations, professionals and interested people, who do not have a diagnosis of dementia, who also run groups and services for us, and for this we are obviously grateful. We cannot do it all, but conversely, nor can they. The advocacy organisations around the world say they have services for people with dementia, but still, most of them are for family care partners and not specifically for us.

People with dementia have felt for a long time that they need their own groups and organisation, and more importantly, need to feel our needs are being met. As we grow in membership, we are simply providing an organisation, that has services including support groups, for our members.

Our point of difference will always be, is that Dementia Alliance International is an advocacy and support group, of, by and for people with dementia, the one thing no other organisation is offering.

In global campaigns to promote dementia friendly communities, having organisations supporting us to ‘do for ourselves’ seems the logical next step, and is also dementia friendly. We may have disabilities, but we will be able to manage our lives independently for longer with support for them, in the same way any other person with any other disability is supported to do so.

DAI support groups

Mick Carmody from Brisbane in Australia is working tirelessly to host and promote support groups for people with dementia all around the world, and he already running them at 5.30 in the morning, and very soon, 6pm at night. Please join him if you would like to be part of a fun group for people with dementia, or support him in his work. Our groups are about supporting each other, about helping newly diagnosed people see their lives are not over, and that they are not alone. They are social as well as support groups, that take place in the privacy of your own home, helping to reduce stigma and isolation. Mick would love to host or set up one for you.

DAI promotes there is life behind a diagnosis of dementia for everyone, and provides a forum for sharing that is like no other in the dementia care sector, or at least that we know of.

Finally, if you from a non English speaking country;

DAI is able to provide the platform for you to run support groups in your own countries, in your own languages. All you need are people with dementia to become members of our organisation.

Oh, and membership, and our services including the support groups, are free.

Copyright: Dementia Alliance International 2015
Editor: Kate Swaffer