Setting up Dementia Alliance International: A roller-coaster-ride!

It is time once again for the DAI weekly blog, and as I haven't received any stories from members, old or new, to share with you, I thought as the Editor I'd better come up with something! Needless to say, my own blog was very short today, and I am also still far behind in my personal writing and overdue uni work, but as I made this committment to DAI, I wanted to follow through.

So onwards and upwards through the fog towards the stars and clouds...

We must all rise above dementia in our own ways, and doing this is one thing that helps me. My goal and passion to give an authentic voice to people with dementia, and to support and advocate not only for them, but to teach that it is possible, keeps me focused and reasonably positive most of the time too.

The challenges of setting up a global, online support and advocacy group, of by and for people with dementia have been extraordinarily rewarding, and also very stressful at times. Personally the last seven months - yes we have been going seven months as of the end of July - have brought me personal joy, but also tears and frustration.

Setting up DAI has been what I can only describe as one heck of a "roller-coaster-ride".

We are a group of people living with this or that type of dementia. Due to our dementia, each of us have varying types and levels of disabilities caused by the symptoms of dementia. They are not always compatible with being productive, nor with being focused, and on some days, prevent us from doing anything at all.

On top of that, our disabilities are always changing, or getting worse, and so we can feel like we are constantly at sea on a small raft, being thrust into whatever the weather decides to send us.

Sometimes, a diagnosis is changed, or taken away, and the emotional roller coaster that sends the person on is tumultous. It is hard enough being told you have this or that type of dementia, but for those people where it keeps changing, or is 'taken away', it takes its toll.

Mr Dementia has a way of getting in the way of living well and in being productive, and without a lot of focus and support, it is challenging to achieve the activites we embark on or dream of, and DAI wants to break that mould, and teach others with dementia that with support and enablement, and the breaking down of stigma and discrimination we can all live better lives.

Importantly, we do not have to act as if we are in the end stage upon diagnosis, nor accept the Prescribed Disngagement dished out to us by our health care professionals. We can and should continue to live our pre-diagnosis lives for as long as possible, in the same way we would if diagnosed with another terminal illness.

DAI has had to cope with resignations of Board members for health or personal reasons, and this is always sad, but also very unsettling as it makes us question what we are doing. We also know that DASNI was the first group in the world of by and for people with dementia, but as it has not remained exclusive to people with dementia, the reason why a number of us felt DAI was still needed. In no way did we mean to offend any of the people who set up DASNI, but rather to complement what they had done, and build on that work.

We have also had to contend with the angst of a few others feeling as if DAI was their original idea, and feeling upset they were not one of the original co-founders. I'm not sure whose idea it was first, but know I have talked about a group like it with other people with dementia for over four years, and the original DASNI members obviously thought about it long before then. In some ways, this has been a stumbling block as it may have held back our membership.

There is always competition for whose idea it was first, and now with the internet being so accessable, it is easy for other groups to emerge; and other groups have emerged since we started, causing us to have to rethink our position, and wonder if they are in competition with us, or simply providing another service. But question it we do, and it brings with it various negative and positive emotions, and takes time away from more productive activites. Life is like that, so it stands to reason setting up a new group is going to have its challenges!

Since 1 January 2014, and without any funding, Dementia Alliance International has achieved a lot, and I thought it was a good time to remind ourselves and our members (people with dementia), as well as our supporters, on what we have already achieved.

Firstly, I would like to achkowledge we have a very committed volunteer and friend, without dementia, Laura Bowley, who has worked hard to support our efforts, and enable us; she helps to run meetings, often writes up the minutes, co-hosts the Webinars, is involved in the Memory Cafe and a number of other things as required. Thank you Laura. There is no way we could have done it without your support and hard work.

1. We have a website, although it is still in progress with updates and work to improve it, run by members.
2. We set up our Vision, Values, Missions and Core Beliefs for DAI; of course this may change over time, but we worked hard on these things, and feel they represent what other people with dementia woud also want.
3. Virtual support groups.
4. Facebook page.
5. Twitter account.
6. YouTube channel.
7. We are building on the Webinars at A Meeting of The Minds.
8. We now have a blog, this one being the 12th of our weekly series.
9. We have a quarterly newsletter:The Advocate.
10. Membership is in many countries now, and is increasing steadily, and will remain FREE. We need to build on membership in other countries, so they can set up and support new local Alliances for people with dementia in their own countries or regions.
11. An active Board, including a few new members who have just joined.
12. A "Circle of Friends" - members (just a reminder, they are all people with dementia) who have started meeting to work on projects, e.g. educational resources and material.
13. We raised over $6000 in less than five months to sponsor five people to attend ADI2014 in Puerto Rico.
14. These funds also allowed us to purchase a banner and purchase t-shirts for members and supportes, to assist with marketing and fund raising.
15. We set up and ran a professional stand promoting Dementia Alliance International at ADI2014; this took a huge commitment in time and energy to set up, and to run each day of the conference, but allowed us to highlight not only the abilities of people with dementia, but to network into other countries and organisations.
16. Our By Laws are almost complete.
17. Our Strategic Plan is in progress.
18. Our 501c status as a not for profit organisation based in the USA is in the final stages, which will allow us to focus on fundraising. This is mostly thanks to Richard Taylor PhD one of our co-founders and an original Board member.
19. A small group of "DAI Associates" - people without dementia, who have committed to volunteering some of their time and professional expertise to help develop the activities of the group, or to support and enable people with dementia who feel they need assistance for their disabilities. This is not so that they can promote themselves or highlight commitment to people with dementia, but instead to provide support for, and enable us; we need to build on this group in other countries, so they can support new local Alliances of by and for people with dementia.

Looking ahead, we are currently collaborating with others to set upsome very exciting projects, and as we develop our skill sets, commitment to the fact we can still function, albeit differently to the way we did before being diagnosed with dementia. We will be adding resources and finding funding, and will achieve our current goals and beyond.

I for one don't want to go it alone any more. Living with dementia is already a desperately lonely experience, and trying to achieve change on my own is nowhere as much fun. Perhaps it is not as productive either. Even though some days I feel frustrated, as if we are not achieving very much, or not quickly enough, writing this over the last few days has made me realise just how much we have achieved, and what we have in the pipeline for the future.

It is very exciting, and I ask you continue supporting us, either through membership, referrals, or finding people who can offer us professional support or funding.

It is no longer, "If it is to be it is up to me (or you)" but rather "what we can't do alone, we can do together".

Editor: Kate Swaffer
Copyright: Dementia Alliance International 2014