4 years ago



“Nothing about us,

“Nothing about us, without us” Support and Advocacy: Of, by and for people with dementia. Dementia Alliance International (DAI) Newsletter 02 April - June 2014 future alliance. Time frames for on-going communication was set up for the end of June. I look forward to positive outcomes, but am aware there may be a need for further communication. I look forward to continuing to work hard within DAI and to a much improved and consumer friendly ADI conference next year. My hope is to see many of you in attendance. Jan Pitts, co-founder and co-chair The following is my experience at the conference. It was amazing to walk into the lobby of the Sheraton Hotel to be immediately greeted by the infamous Laura Bowley, and quickly rushed over to a table filled with familiar faces. Being the last to arrive in San Juan afforded me the opportunity to finally meet the DAI Board members who had been faces on a computer screen for way too long. There were also partners who I had only heard about in the past. It was a precious moment I hope to remember always. Being my first ADI conference I was not sure what to expect. There was a breakfast the first morning for people with dementia. There were mixed feelings of happiness for those who were present, but also overwhelming sadness at how few of us were in attendance. What a marvelous opportunity for people with dementia which just did not meet my expectations. Change had to be one of my main objectives during my stay. Our booth space turned out beautifully. We were honored to have numerous visitors from all over the world. DAI received a warm and heartfelt welcome. The interest in our message was overwhelmingly positive. Many representatives from different organizations and companies were interested in on-going association with us. I had the special honor of presenting DAI during one of the sessions. I was able to present details of my long career in social work and advocacy for people with intellectual and developmental disabilities. Making the point that they had long fought for community inclusion, person-centred services and an end to institutional type living, many of the challenges currently faced by those with dementia and being sure to get across the point that we should learn from their lived experience and immediately move past these obstacles. We were also able to meet with ADI executives to discuss a collaborative, but independent, Richard Taylor “The times, they are a changin” Bob Dylan Bob was right then (January 13, 1964), and he is right now. Having recently returned from the annual conference of Alzheimer Disease International (San Juan, Puerto Rico) I had the opportunity to spend time with folks who are now new kindred friends of mine (others also living with the symptoms of dementia, living literally all around the world). A generation is now defined as twenty five years of human experience (it was formerly twenty years), and within the past ten years I have seen what appears to be three sub-generations of advocates composed of folks living with the symptoms of dementia. The first generation within a generation, I was there ten years ago, is composed of mostly newly diagnosed individuals who sound hungry to tell their stories. They want others to know exactly what it is like to live with dementia, and they tell others this through their life’s stories. Their faces reveal their sense of relief that others are interested in hearing exactly how and what it is like to live with dementia. The second sub-generation is composed of frustrated/angry folks living with the symptoms of dementia of this or that type. They have been telling their stories for a number of years and are increasingly frustrated that telling others their stories seems to have little or no impact on how others treat or seem to understand them. They have spoken at walks, fund raisers, radio/ TV shows, family gatherings, Alzheimer’s group Please subscribe to our mailing list at or contact us by email

“Nothing about us, without us” Support and Advocacy: Of, by and for people with dementia. Dementia Alliance International (DAI) Newsletter 02 April - June 2014 meetings – yet to them there is very little change in how others seem to see them, how others seem to understand them. This frustration held in, sometimes turns to anger. The third sub-generation (I include myself in this group) has been through the first two steps and has realized that storing all this frustration, and acting on all this pent-up anger is of little use to achieving their overall goal of changing how others see them and others. In fact others sometimes tell them how angry they are, and point out how this anger is counterproductive. These folks have again turned inward; although this time they turned past their anger into introspection. Why is it that folks, having heard their stories, having witnessed their frustration still hang on to their stigmas, their view of people with dementia as half empty, as fading away, as incapable of learning or doing anything new or different? They are now witnesses to the role stigmas play in their lives. How limiting, sometimes hurtful these stigmas are to them, their self-esteem, their purpose, the sources of joy and satisfaction in their lives becomes less and less as other’s expectations of them becomes less and less. Keeping this now understood source of frustration inside also turns to anger. They are mad and they don’t want to take it anymore. They stand up and speak out, are more confrontational, are more and more misunderstood by those who didn’t understand them in the first place. This is what I saw. This is what I felt. This is what I feel. This is now my sub-generation. This seems to be the lesson I have learned from my ADI experience. Kate Swaffer Attending my third Alzheimer’s Disease International conference was my excuse for visiting Puerto Rico this year, with a layover of six wonderful days in New York. What a great excuse to have a holiday prior to the conference as well as tick off one of the things on my bucket list! This year the conference had a different ‘feel’ about it, perhaps due to fewer in attendance or the very relaxing location. Although there were many very interesting topics, many of the speakers used very offensive and dementiaunfriendly language, which on a positive front has provided the impetus to have ADI agree to add language guidelines into their speakers Terms and Conditions. As many of you know, the use of appropriate, non offensive language is one of my hot topics, and this is a project for our Board and members to work on as well. The highlight was of course meeting some of a the DAI Board members I’d not met before except online, and spending time with them and Laura Bowley, one of our DAI Associates who is also volunteering a considerable amount of her time and expertise as our Executive Director. All members of the Board in attendance presented on topics which we are highlighting each week in our weekly blog series. These will include video recordings if available, and if possible the notes and power point presentations delivered with them. The response from one member of the public whose husband lives with dementia made it all worthwhile. She stood up and publicly announced our presentations had changed her and their life, and that she felt empowered they could go home, denounce the Prescribed Disengagement also given to them, and learn to live well again. Richard Taylor, Sue Stephen, Jan Pitts, Maggie Weidmark and I had all presented in the Living with Dementia session and responded to questions on a panel afterwards, and this feedback definitely makes the effort of living well, and publicly declaring that it is possible, worth the effort it takes. Dementia Alliance International very successfully presented themselves to the dementia community at this conference, with a banner and a conference booth in the Exhibition Hall, and with member T-shirts proudly announcing we are the experts through the lived experience, and supporter t-shirts available to assist our group in its fundraising efforts, all went to making a very professional statement about who we are. We are an Advocacy and Support group, of, by and for people with dementia, and at ADI2014 we were able to network with a number of other countries who want to join in this work. As a result of our efforts, we hope to collaborate with ADI in some joint projects, in particular to increase the voices of people with dementia around the world. Sue Stephen My attendance at the conference made a deep impression on me. I changed from feeling like a person trudging along a lonely path with my new found status of dementia to a new way. From the very beginning, the warmth and friendliness of everyone at ADI2014 was outstanding. Everyone shared their knowledge and many new friends were made. Even when people had different points of view, the purpose was centered on finding the best answers we can to what is the mystery of dementia. The conference was very busy, rich in information and full of lots of conversation. My head was spinning and I am still digesting everything that I heard. I have been to many conferences and I think this was the most people friendly one I have been to. I think this is due to the passion of everyone to help. It is a great experience for people with a diagnosis to attend. I learned and gained a lot of confidence in myself. Please subscribe to our mailing list at or contact us by email

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