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Jan Pitts introduces DAI at the recent ADI2014 conference

Janet Pitts, co-founder and co-chair of Dementia Alliance International attended the Alzheimer’s Disease International conference recently held in San Juan, Puerto Rico (#ADI2014). In the Living with Dementia session, Jan presented this exciting new group, Dementia Alliance International, to an international audience.  Congratulations Jan!

Below is the video recording taken on the day, just uploaded onto our new YouTube channel. Below you’ll also find the script of her presentation.

Click on the link to view the slides of Janet Pitts Presentation

Jan’s Script:

“I spent my youth involved in academics and sports. This gave me great experience in indurance, persistance, and patience. I learned to work well with others and that decisions made by the group were much stronger than any individual could achieve. I also learned that dedication and hardwork were the cornerstones of self-promotion.

After college, I became a social worker for the State of Oklahoma. I held many positions; working with single parents, the aged, blind and disabled, long term care, and then finally the last 14 years I spent working for the State Advocate General.

Working for the Advocate General afforded me the oppurtunity to work as an advocate for people with intellectual and developmental disabilites, a true passion and pleasure. I also worked as an investigator of abuse, neglect, maltreatment, financial exploitation, sexual abuse and even deaths of both people with intellectual and developmental disabilities and children placed outside of their home. The last six years I was a Program Supervisor for our Intake unit, Advocates, and Investigators.

Suddenly in 2003 I was no longer mentally capable of performing my job duties, and knowing it was the best thing for the department, I retired on disability. One year later I was diagnosed with Frontal Temporal Dementia or FTD. A disease of the frontal and temperol regions of the brain. The disease is terminal and there is no treatment for slowing the progression at this time. The average life expectancy is from two to ten years, according to most sources.

So I was retired years earlier than I ever imagined. I spent nine years sitting at home ready to die, after all the neurologist had given me a life expectancy of one to two years, and I had followed his suggestion of getting all my affairs in order. Withdrawal, isolation, apathy and agoraphobia had set in, whether this was due to my diagnosis or my loss of interest in life has become obvious to me.

Then one day I got on my computer and accidentally found a support group for people with FTD. I joined and then was referred to a second group for anyone with dementia. Through these groups I began to think again and to ask questions, I also listened to the questions and responses of others, noting mentally the way people were having to learn about their diseases, as well as how they were making life changes to accommodate the challenges.I learned there were a great many in my situation, who were having to rely on each other and social media for answers to their numerous questions.

I still dealt with a great deal of isolation and apathy. One day there was a post asking if anyone was interested in participating in a production, with the actors being people with dementia. The organization was To Whom I May Concern, which is a series of plays to educate others on what life with dementia is like. I met and worked with some peers who will always remain very close to my heart. I was also introduced to Laura Bowley and Maureen Matthews who I have been truly blessed to have in my life.

This led to my participation in a new Memory Cafe which was being started by Laura. I take great pleasure in having named it Cafe Le Braine, we meet on-line monthly. I also attend the monthly Meeting of the Minds webinars, of interest to those living with dementia, hosted by Laura and Richard Taylor.

Somewhere along the way, through all of this involvement, I lost a great deal of the apathy I had been dealing with, it also helped me to start working on the Agoraphobia.

I have been fortunate enough to find a new passion and the means to be a self-advocate and advocate for people living with dementia, a return to the dream I thought dementia had robbed me of. I had witnessed first hand, and was well aware of, the long hard road people with intellectual and developmental disabilities had walked to find their place in the community, to have person-centered services provided and to tear down the walls of the institutions they had been sentenced to life in. We don’t need to repeat that path, rather we need to learn from the mistakes made on their behalf and move forward. Communication and knowledge is the key.

I am proud to say I am a co-founder and co-chairman of the Board for a new organization called Dementia Alliance International. I am very proud of the work we are doing and the progress being made since our inception in January, 2014.

I believe strongly in our vision, “a world where a person with dementia continues to be fully valued”. I am a living example of what happens when you take away the value from one’s life. I am also an example of the wonderful things that can happen when you take that value back. Dementia Alliance International is the vehicle to a better quality of life for each of it’s members who wish to live in a world where they are participants, not spectators.

I want to be sure everyone is clear on DAI’s mission which is: To build a global community of people with dementia collaborating inclusively to: Provide support to live well with dementia; To model to others; Advocate for people with dementia; and Reduce stigma and discrimination and ensure our human rights.

Let me explain how DAI plans to remain sustainable over the years. It is through utilizing our human resources and identifying financial means. There is currently a seven member board of directors, which will increase to twelve in January 2015. We have a group called the Circle of Friends, to be comprised of thirty individuals with dementia, who want to work on special projects and on-going administrative tasks while being mentored by Board members, if their interests lie in a future roll on the Board. We have also identified the need for an Advisory Council, these will be five like-minded individuals who do not have dementia, but have an interest in promoting the autonomy of the members of the organization.

Already available, or soon to be, is our Facebook page, Twitter account, and our website that contains information through a resource room, on-line support groups, weekly blog, media watch articles, informational and relevant short videos on issues relevant to educating members, our quarterly newsletter, as well as connections to You Tube videos. There is an organizational connection to the monthly Meetings of the Mind webinars, To Whom I May Concern and to Cafe Le Brain.

We have determined that it is in the best interest of present and future members that membership remain free of charge. That being said, it is vital to our future that we identify stake holders to assist with start-up money who, like us, believe the need for this organization is essential and long over due. Support is also needed to become a non-profit organization.

 I would like to close with why DAI is different? We offer people a unique voice and viewpoint, of, by, and for people with dementia; Membership is 100% inclusive to people with dementia; We are committed to change; and we are committed to living well.”

Thank you Janet.

Attending ADI2014

Richard Taylor, Susan Stephens, Janet Pitts, Sid Yudowitch, Kate Swaffer & John Sandblom
Richard Taylor, Susan Stephens, Janet Pitts, Sid Yudowitch, Kate Swaffer & John Sandblom

This is to be the first of our weekly blog series, highlighting our most recent achievement. After setting up this new advocacy and support group, of, by and for people with dementia, our modest but successful fundraising efforts enabled five Board a members and co-founders to attend ADI2014, the 29th Alzheimer’s Disease International  conference in San Juan, Puerto Rico.

Alzheimer’s Disease International (ADI) is the international federation of 79 national Alzheimer associations around the world. It was founded in 1984 to help establish and strengthen Alzheimer associations throughout the world, through the exchange of information, skills and models of best practice.  ADI wants to improve the quality of life for people with dementia and their families and to raise global awareness about Alzheimer’s disease and all other causes of dementia.

Visiting Puerto Rico was a wonderful experience, with relaxed locals, excellent food and if only we’d had enought time, some wonderful beaches, rain forests and I am sure, lots of dancing! We were lucky as the weather was sunny, and the predicted rain waited for us to depart. Virtually everyone spoke English, definitely making it easy for us, and the final nights food was, according to the restaurant staff, an example of what the locals eat a home. It was delicious!

The theme for this years conference was Dementia: Working together for a global solution. Over the course of three days, members of our group presented a number of times, and I was also involved in the opening and closing ceremonies. Below is a list of the presentations made by members, and as we finalise the editing,  video recordings of these presentations will be uploaded to the website.

Richard Taylor: Living Beyond the Stigmas Associated with the Various Forms of Dementia
Kate Swaffer: Non-Pharmacological Interventions: One Patient’s Journey
Maggie Weidmark: Challenges To Early Onset Dementia
Sue Stephen: Living with PCA
Janet Pitts: Introducing Dementia Alliance International
Kate Swaffer: Introducing the Alzheimer’s Australia Dementia Advisory Group: Empowering People with Dementia
Selva Marasco: Sanación Y Demencia / Healing And Dementia
Laura Bowley, John Sandblom & Richard Taylor: Internet Support Groups for People with Dementia
Richard Taylor: Alzheimer’s From the Inside Out: Living with dementia for 10 years – what I’ve learned
Kate Swaffer: Prescribed Disengagement, Models of Careand & Quality of Life
Richard Taylor: Responding To The Charge “You Don’t Have Dementia, You Are Not Acting The Way I Think People With Dementia Should Act”

This conference gave Dementia Alliance International its first opportunity to announce to the dementia community, in a more tangible way than our global, online presence, just who we are and what we wish to achieve for those we represent, namely, people living with dementia. It also allowed us to meet each other, forging lifelong friendships, and the chance to learn more about each other’s professional acuity and backgrounds.

No longer will we accept anything about us without us; no longer will we accept the role of victim of sufferer; no longer will we be seen as fading away; no longer will we accept being called demented. Our family carers supported us, we supported each other, and we learned we can and must stand up and speak out, and more importantly, we empowered many other people with dementia to do the same.

People with dementia, until the late stage, do not need day care or respite, nor do they do not need to accept prescribed disengagement, they need to continue to live meaningful and engaged lives, in the same way as others. It is the power of doing truly meaningful and engaging activities, with like-minded people that offers us real support, not just sitting around in a ‘support group’ discussing our troubles and ruminating over the negative parts of living with dementia or doing activites others choose for us.

We now have a lot of work to do, to embed the groundbreaking work we have just seen culminating in such a public presence, and I believe we will look back at this time as one that will have made history in changing the lives of people with dementia, by people with dementia, and which will be seen as a moment in time from which there was no turning back.

Kate Swaffer, Editor DAI