DSS Champion Helen Rochford Brennan

Helen Rochford-Brennan is thinking about memories - the ones she may have already forgotten, the ones that could still slip away. 

The Sligo woman has been advocating for others for much of her adult life, but when it was confirmed that she had early onset dementia more than a decade ago, when she was barely in her sixties, it meant she had to begin fighting for herself. 

"I thought it was due to getting a whack on my head," Helen says of the early difficulties that eventually resulted in the diagnosis. "I just went with the flow, I was working, having difficulties remembering things and in particular things at home - that is where the difficulties really arose." 

Sean, her husband, and their son, Martin, would tell her something and she would forget. Ultimately, her diagnosis brought a strange sensation - relief that she finally knew what was happening, devastation because she finally knew what was happening. 

"I talk a lot about my sense of purpose," she says. "For me, it is important that I get up every day and contribute and use my time and keep busy because if you don't use it, you lose it. You have to build up your confidence again, because it gets a right whack. And the great thing is you are helping others, empowering them." 

There is no doubt about the veracity of that statement. Helen is involved in dementia awareness organisations in Ireland and in Europe. As she says, "the more I told my story, the more people understood they are not alone." 

Yet she felt a little lonely at the start, describing a lack of pathways for services and treatment, this sense that you had your diagnosis, now go and deal with it. "Today we are in a far better place," she says. 

That is not to say that more cannot be done. She cites the lack of basic information when it comes to knowing how many people have dementia or related conditions in Ireland and speaks of the lack of age-appropriate care and geographical disparities when it comes to the availability of services. It is why she believes the Decision Support Service and the associated legislation can make such a difference. 

"Those are the things that are important to us, that we make the decisions for as long as we can, and our rights are upheld," she says. "That we can dip into supported decision makers - and that will enable us to exercise our right on all the decisions that affect our lives. 

"It is about being person centred - that’s what this is. We need more talk about it, about understanding it. People with dementia, or older people, it's also about individuality - who is Helen? What does she want? What is important to her? My will and preference is what is important every day of my life." 

Helen acts and speaks like someone adding new experiences to her life every day, although she says candidly: "I may not remember any of the great memories Sean and Martin and I have banked along the way." But that does not mean the end of the story. 

"We want to live," she says.  

To learn a little bit more about Helen, please watch a short video at this link.