Tag Archives: Copyright: Dementia Alliance International © 2015

“Nothing about us, without us”

DAI nothing without #35CDB0

Day 5 Dementia Awareness Week UK 2015

Vorstand  HR 1 (2)Although there are seven days in a week,  this will be our final blog for this event. As editor, I have tried to highlight some of the DAI and other presentations from ADI2015, as well as some of the issues we face.

The catch phrase, nothing about us without us, has almost become a tick box for organisations, in the same way person centred care is written up in documentation, but rarely delivered. Far too often, they may include one of us, or use the excuse that they tried to get people with dementia involved, but it is to difficult to find anyone with dementia willing to stand up and speak out or be involved.

The road of advocacy and self advocacy is a really tough one, as often, to have become an advocate, you must be part of a marginalised group, and often one that is being discriminated against, or you have to speak out on behalf of someone who is being treated badly. This means, of course, you often make quite a few enemies as people do not like hearing they are not doing things well in someone else’s opinion, or perhaps the change you want, does not fir their own agenda or business plan.

There seems little point continuing to discuss many things with some people, as being seen as militant or too direct and forceful is not always helpful. However, if an organisation does not like what the advocates who speak up about, either things like their basic rights, or for change they feel could improve the care of a certain group, or positively impact an issue, then, surely, there might be a need to at least look in the mirror, and be open to full and transparent discussions. I continue to speak out for full and proper inclusion of people with dementia, at every level in every conversation about them.

Unfortunately, many of the advocacy organisations in the dementia sector are not willing to accept their consumer voices as motivators for change, even when, for years, we have been telling them the services provided are not working for us, or there are, in fact, not enough services for us or not the services we want. What is the point of being a consumer advocate, if no-one bothers to listen, or more importantly, accept the criticisms and use to as positive fuel to consider change. I’ve been part of many organisations, either employed or as a volunteer, and it is the ones who are able to accept critique well, that have the greatest impact on the lives of real people.

As the life of Dementia Alliance International (DAI) continues, and the authentic voice of people with dementia becomes stronger, working at the global level, on matters than can be impacted locally, seems to be the most productive way to be an advocate. On the way, DAI is providing services and education for people with dementia, that for the most part, advocacy organisations are not providing, or not providing well.

Alzheimer’s Disease International is really listening to us now, and through collaboration with them, in the process, DAI has become the peak body for people with dementia in the world.

It is thrilling to be able to report here that we have been contacted by the Alzheimer’s Society UK to discuss collaborating with them and work together in some way, and I am very much looking forward to meeting with their CEO, Jeremy Hughes, in June this year.

We now all need our own local, state and country advocacy organisations to come on board, and to really listen to us… and do the same. We are not a threat, we merely want to work together.

Working together, we will improve the lives of people with dementia and our families.

It is not acceptable to continue to do anything, about us, without us.

Editor: Kate Swaffer

Copyright: Dementia Alliance International 2015

Ps. I have written on some mildly contentious topics on my own blog this week, including Who am I?, Whose story is it?, Pain vs Suffering, Behaviour Management or Staff Education and Advocacy and activism for people with dementia.

Chris Roberts presents at ADI2015

DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background
DAI Board member Chris Roberts presenting at ADI2015 and Marc Wortmann, CE of ADI in the background

Chris opened the workshop session on Friday 17 April, titled: Involving People with Dementia in Research and Clinical Trials.

I’m humbled and honoured to be a part of this conference and listening to all the great work actually being done on my/our behalf.

You see “I” have dementia, mixed dementia, vascular and Alzheimer’s, but with emphasis that I may “have it” but it certainly doesn’t have me!

Yet.

Who am I? ;

I’m 53 years young, married with five children and two grandchildren; my wife is still my caring wife. I live in North Wales, UK.

Pre diagnosis

For a couple of years before I was 50, I was having problems with scattiness, my memory and getting lost in familiar places, we never drew the dots between myself having a stroke in 2008 and what was happening, lack of education about the dementias.

But I also have a diagnosis of emphysema, so we likened my scattiness to my lack of oxygen and self diagnosed for a couple of years, totally wrongly! 

It was during a regular check up at the doctors that we mentioned this, she said no, no!! 

So the testing began.

My diagnosis only took 13 months, I didn’t mind this because as well as a timely diagnosis it also has to be a correct one.

No support or information was given during this process.

At diagnosis time, just as we were being told, there was actually a knock on the door. The receptionist asked if we could hurry up as someone had been waiting a long time and was getting agitated!

I was given what I call my ‘welcome pack’ and shown the door,

We knew absolutely nothing; we were just left all alone! 

We stood in the car park and cried.

We called family together for a holiday, the last one,

We were grieving and I wasn’t even gone yet.

Total lack of support and information!! 

But I had responsibilities, I am a father husband and grand father, we needed to know more, we researched and trawled the internet for information, but we needed correct information, there is so much rubbish around! 

Dementia is not death on diagnosis

 After researching, we realised it wasn’t death on diagnosis!

I pulled my socks up and decided to look forward now, not back, to embrace my new future.

Affairs were put in order; I even chose a care home for the future.

Then we got help from the Alzheimer’s Society UK, the dementia advisers were great.

We realised how little folk know, 

Everyone has heard the word… “dementia” but most don’t understand what it means! 

We decided to be up front with diagnosis, told everyone, even put it on face-book, I now use social media to help educate others, to spread good info, even started my own information page.

I was feeling empowered again! Worthy!! 

We now meet with our local council services and now advise for them, even started a new social group for all ages and their families

Joined the dementia friends initiative, trained as a dementia champion and with my wife’s help have delivered over 18 sessions over the last 12 months speaking to 300 people about what dementia means. 

I found Dementia Alliance International, who are for and by people with dementia, advocating, conducting webinars, virtual cafes and master classes; I even became a board member ! 

Joined and contributed to dementia mentors, hosting one of their virtual cafes, even started talking about my experience of dementia, after all we are the experts!

They’re now being 6 national working groups of people with dementia around the world with dementia alliance international at the forefront working in partnership with Alzheimer’s disease international. 

What about my family?

That’s me but what about my family? My diagnosis was also given to all my family, even my friends! 

We can’t ever forget that, they will long remember when I can’t.

It can affect them just as much.

As much info and support is needed for them, younger carers especially fall through the net.

My mum in law has recently moved in with us, herself being diagnosed with Alzheimer’s too, one more the wife might need a license?!

But as we’ve heard here today, things are changing and with the continuing support of people like you more people with dementia are also being included in their own decision-making.

Research is being funded better than ever, education is being promoted and stigma is being reduced.

Care and appropriate services are being supplied and more importantly being improved upon, 

But still there is a long way to go yet!

From the bottom of my heart, and on behalf of people with dementia, I thank all who are trying to make our lives better whilst we try to live well.

Thank you very much! 

Seeking volunteers

volunteer
We are seeking the support of more volunteers, with and without a diagnosis of dementia.
Dementia Alliance International, an advocacy and support organisation, of by and for people with dementia. We are also a registered not for profit organisation thanks to the very generous donation by Dr Richard Taylor PhD. 
A few of our Board members, and some members of our Circle of Friends already volunteer significant amounts of time and expertise to run DAI, and some are working for huge amounts of time to run this group. 
We also currently have some very generous support from one person without dementia, who has informed us she will only be available to continue with assistance until July this year.
We have no regular funding, although last year a few members personally raised enough funds to support six members to attend ADI Puerto Rico, and this year, we have had limited funding from ADI since our collaboration with them, also only for use to support members to ADI Perth and certainly not enough for more than a very few to be able to attend, plus attendance at the two WHO meetings.
It can be frustrating trying to be an active member of any group, but specifically in this one due to our own symptoms of dementia it can be more difficult. 
Everything takes much longer. Sometimes we forget to do things we promised we'd do. Sometimes we even forget we said we'd do them. Members might find it frustrating, and due to their own symptoms of dementia, may not be able to be more supportive in the running of the group, but as members, they still expect a lot. Sometimes there are misunderstandings, personalities get in the way, and the D-factor is hard for us ALL to live with, even those members working hard to live better with dementia than others think possible.
We ALL have dark days, when it seems it would be easier to give up and cry.
The more we give to each other, to this organisation, and indeed to our own communities, the more we get back, and we need more people to give of their time and expertise to support the work of a very few members. Please consider actively volunteering rather than waiting for someone to contact you.
Specifically, we need people who would be able and willing to undertake some administrative support including the following;
  1. Support as required for taking and typing up minutes of meetings (in Australia, this is often at 6am - athough we record the meetings, so they can be done after!), assisting with editing and other administrative assistance as required.
  2. Support with social media and our website
  3. Mentoring new members
  4. Managing our online programs, including setting up the Event brite invitations, managing the time zones, etc. To give you an idea of what this entails;
    • We have a monthly Webinar called A Meeting of the Minds, usually with guest speakers
    • We run weekly support groups in two time zones
    • We run monthly cafes called Cafe Le Brain
    • During Dementia Awareness Month in 2014, we ran weekly Master classes and would need assistance with this if we repeat them later this year
    • We have a YouTube channel which occasionally requires support, e.g. uploading of new videos
  5. Some support with newsletters, marketing, and any other thing that might be requested of us, including presentations and other material to support attending or presenting at conferences.
Also, an update on the Wish Project we were working on, including the possibility of producing a book of wishes and images, is not for any organisation to use to sell, if it gets completed, it will be for promoting our members wishes. However, if there was a suitable way DAI could turn that into revenue raising, obviously with appropriate consents, it may be worth considering.  All funds would go to members and services; it costs money on a monthly basis to run DAI, which we don't have other than from some generous but only occasional donors.
If you don't have time to volunteer, but can afford to make a donation, then please do so. If you are attending any of our Webinars, and can afford to donate at the time you register, then also please consider doing so as it costs us money to run these events, for which we currently have no regular funding. 
What we can't do alone, we can do together.

Introducing Board member Helga Rohra

Vorstand  HR 1 (2)Helga Rohra, our friend and a Dementia Alliance International Board member from Munich Germany was diagnosed with LBD about 8 years ago. She has given us the honour of sharing her story here.

After one year of struggle and hiding because of the stigma connected to dementia there was a big turn in her life.

Meeting strong advocates in dementia at an International Conference of ADI in London 2012 she got a strong belief. She started to stand up and speak up for all of her fellows touched by dementia in Germany. She now remains busy  lecturing about what it feels living with dementia, focusing on the still existing abilities.

Her demand was inclusion from the very beginning after getting diagnosed, and her book (in German and Romanian language) entitled:”Stepping out of the shadow” highlights these demands. Ever since she is also a speaker at Conferences of ADI and AE.

With the foundation of the European Dementia Working Group of people with dementia in 2012 a milestone in dementia history was set as the second Dementia Advisory Group was formed. She is the first Chair of this group. Her home country Germany awarded her in Dec.2014 the Commitment Award on national and international level.

An incentive for Helga for new projects together with dementia friends all over the world.

As dementia, we know no borders and TOGETHER we are strong!

The picture above shows Helga together with great advocates and two other Board Members, Chris Roberts and Agnes Houston at AE Conference in Glasgow/2014.

Thank you Helga for sharing your story.

Editor: Kate Swaffer