This week is Dementia Awareness Week in Scotland, and they started the week by saying: Scotland’s Dementia Awareness Week is Monday 4 June to Sunday 10 June 2018. We’re calling on the nation to help make sure nobody faces dementia alone.
In the spirit of supporting another country's Dementia Awareness week, as we did with the UK's Dementia Action Week two weeks ago, DAI is publishing another series of five blogs this week to keep the focus on dementia strong, and also global.
Along the lines of the goal in Scotland to ensure no one faces dementia alone, in our blog today we update you on a project DAI is involved in which is supporting dementia in Low and Middle Income Countries, with a report on the STRiDE Project in London, UK, March 8 – 11, 2018, written by Eileen Taylor. Thanks to Eileen and her husband Dubghlas for making the effort to attend the session in London to get the STRIiDE project started, and for the following report.
Report on the STRiDE Project in London
After thirty-three hours of travelling (including delays) after leaving Brisbane, we arrived London on Tuesday evening. The taxi took us to our hotel which was very nice and were met by a STRiDErepresentative, Anji who made us most welcome.
On Wednesday evening we met with all the STRiDEProject participants for a Meet and Greet. And, the Program began in earnest on the Thursday. Professor Martin Knapp welcomed everyone followed by an overview of the project.
A representative from each of the STRiDEcountries (Brazil, India, Indonesia, Jamaica, Kenya, Mexico, and South Africa) presented an overview of what was happening dementia wise in their country. It made us aware how fortunate we really are in the West and how challenging it must be for many people living with dementia.
After morning tea, Dubhg and I made our presentation (20 Minutes) for Dementia Alliance International (DAI). Our focus was on the work that the DAI so capably does around the world. Highlighting our work in Human Rights and our On-Line Support Service. Major plug was made for DAI-Webinars and completed with a short overview of my story of living with dementia. After my presentation I was warmly thanked and greeted by Paola Barbarino, Michael Lefevre and Wendy Weinder from Alzheimer’s Disease International (ADI).
In the afternoonSTRiDE gave an overview of their approach they intended to take to bring about change in the developing countries. These items were like goals and described as Work Package Plans (WP 1 – 10). That evening the group met again for dinner at the LSEbuilding. By this time, we were beginning to develop several relationships from the various countries represented. On this day we all mostly listened, but were told things would be different on the following days.
On Friday we all concentrated on the STRiDEoverall, Theory of Change led by Erica Breuer from the University of Cape Town, South Africa. Lots of small group discussions, questions, reflections, and sticky notes filled the walls leaving us wondering how it would all come together. The group met for dinner on the Friday.
On the Saturday, in the morning, Erica began to tie together all the items discussed on the Thursday regarding the Theory of Change. In summary, the Theory of Change is a complex aim to help groups inform contextually about their Research, the Tools they use to bring about change, the Training required, any Contextual Barriers and Facilitating Factors for Influence, as well as Indicators to measure Success.
Later in the afternoon we were led by Margie Schneider University of Cape Town and Anji Mehta from LSE linking the Theory of Change into Work Package Planes WP9 and 10. In the evening all the leaders from the Alzheimer’s Associations form the different countries including us from DAIwere invited by the ADIto meet at their office, for drinks and a social get-together. Later, the entire group met together for dinner.
On Sunday morning Dubhg and I had an hour to make another presentation, this time in the form of a workshop of what it is like to live with Dementia in a Virtual experience, entitled: “People with dementia influencing dementia care are research”. We ended the group experience with a video featuring Kate Swaffer relating to her experience. The overall response was positive with several Participants (including doctors) commenting on how it had changed their understanding and views of what it might be like for someone to live with dementia.
The remainder of the day was taken up with ensuring all the countries understood what would be required of them including ethics and management processes as well as the need for them to plan their own Theory of Change Workshop in the respective countries.
The STRiDEleaders then answered questions and fielded discussion about reporting structures, the group was divided up into two main groups - The Researchers in one group, and Representatives from Alzheimer’s Associations by country, theADIand the DAIin the other group. Management and reporting structures were discussed with reference to Contracts (including one between STRiDEand DAI).
The two groups then met again and was followed by some fine tuning. The STRiDEGroup Project closed as 4.00 pm.
Spending four intense days in a closed room with thirty odd people and eating and working together allowed us to bond with these folk and form close relationships. We are thankful for the privilege and honour of being able to represent the DAI.
I would very much like the opportunity to continue working with the STRiDEProject into the future as I believe the continuity and experience gained will help to enhance their objects.
DAI Board member and Secretary, Mrs. Eileen Taylor