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Helen Rochford Brennan reflects on progress made during her 4 years so far as Chair of the EWGPWD

Friday 30 November 2018

Throughout my four years as Vice Chair and Chair of, the European Working Group of People with Dementia (EWGPWD) I have met many people living with dementia throughout Europe.

I have listened and borne witness to their experience as they struggle to be active citizens and fight society’s perception that they lack capacity to make choices about their lives.

But there is progress, and as we approach the end of the year I want to reflect on the positive and in particular acknowledge the rising sound of the lived experience; how it is being heard and most importantly, valued. Because sometimes it is important to focus on the good news!

In my advocacy work I speak a lot about my dark days after diagnosis. In those dark days I never thought I would be where I am now. It took time to accept my diagnosis in particular to accept that there is no cure for Alzheimer’s disease. But I still have a life. A very different life from what I imagined, it’s a very full, joyful and fulfilling new life. I call it my Alzheimer life.

In my travels throughout Europe, meeting people who are passionate about quality dementia care is energising. I see changes in how those of us living with dementia are viewed and, slowly but surely, I am beginning to see a new understanding of our human rights. We must ensure our human rights are not violated but it is also very important to keep in mind we have a human responsibility.

And critically, I see real value being placed on the lived experience, sharing my story is very rewarding as it is educating the public on how people with dementia can live happy lives with minor adjustments for an inclusive community.

Research has been such a rewarding experience, and one thing I really enjoyed and would like to highlight is the EWGPWD's strong collaboration over the last two years with the ROADMAP project, which is about real world outcomes for better care in the context of Alzheimer’s disease. It has been very satisfying to see that our input has been highly valued and has influenced the development of the project, particularly with regard to the definition of outcomes and ethical issues. I was also personally involved in meetings with other experts from Health Technology Assessment (HTA) bodies and this was a really interesting experience. This project is now coming to an end and I hope that we can keep this nice collaboration going in the future. I look forward to working on other European projects such as PARADIGM, SPAN+, INDUCT, EPAD and hopefully many new ones!

In my home country of Ireland my work has been truly acknowledged over the past year. I received three awards for advocacy work in changing the perception of Alzheimer’s in Ireland.

  1. Sligo Person of the Year presented by my Local Council.
  2. Sligo Business, Economic and Social Inclusion: A Lifetime Achievement Award.
  3. National University of Ireland Galway awarded me an Honorary Doctor of Laws.

The Honorary Doctorate is particularly significant because it acknowledges my work in advocating for Human Rights of people living with dementia. In accepting the award I acknowledged all of us with dementia, my colleagues on the EWGPWD and the Irish Dementia Working Group who all work so hard to ensure the lived experience is heard.

We all work to ensure the human rights of people living with dementia are upheld. And as we go in to this holiday season I encourage all European citizens living with and without dementia to remember we are all human, we are all the same, all trying to find our own path.

I am now a Carer for my husband without support, I am struggling with household tasks as I observe my dementia progressing. But I live with hope and I focus on the positive. And this holiday season it seems appropriate to think of children’s author C. S. Lewis, who said “It is not the load that breaks you down, it’s the way you carry it”.

Mile Buiochas(many thanks) to Alzheimer Europe, The Alzheimer Society of Ireland and my volunteer travel support Carmel Geoghegan, for helping me to achieve another great year of advocacy.

Nollaig Shona agus Athbhliain faoi Mhaise Duit(Happy Christmas and New Year's Eve)!

Helen Rochford Brennan,

Chairperson, EWGPWD