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.