Step Up for Dementia Research

Latest news and research outcomes

Meet Eileen Taylor

Friday, May 3rd, 2019

Eileen Taylor is a wife of fifty years, a mother to two sons and a toy poodle, and a grandmother to five. Eileen was a counsellor before she retired shortly after learning, at aged 59 years, that she has the gene for Alzheimer’s disease.

Eileen describes living with dementia as having “my good days and my bad days”. She says it is like hearing or seeing something for the first time, “My husband will talk to things we have done in our lives, places we’ve been, movies we’ve seen, and I’ll say, “oh, really?”.

Stepping back from the diagnosis

Eileen shares that one thing that has helped her and her husband, Doug, is to “externalise” the dementia. “We call it a dark fog, and when the fog is thick, it is not easy”, she says. “Having dementia is horrible, but you have to learn to live with it.  Every day is a new day”, she adds.

We’re not just participants, we are people

Eileen explains that after receiving her diagnosis, the doctors advised that she participate in a medical research trial in order to receive the very best care. Eileen talks about feeling very cared for during the trial, “they saw me as an individual. I didn’t feel like just a participant. Researchers need to know that we all have previous lives, they need to get to know the person”.

A negative surprise

However, Eileen was careful to temper expectations that not every trial is successful. She describes shock and disappointment, as well as a grief process, when after five years of being on a clinical trial from which she felt her cognition was benefiting, it was stopped abruptly because the researchers were not getting significant results. “It has not stopped me from going on another trial though”, she says.

Paying it forward

Eileen thinks that the concept of StepUp for Dementia Research is fantastic, because she does not know of any other place where you can sign up for research. For Eileen, she participates in research, “for my kids, and my grandkids, because I have the familial type of dementia”. She says, “I give as much as I can now living with dementia, to make it easier for our future generations living with dementia. Research is helping to find a cure, but also to help with a better quality of life. Dementia is not all end stage – there is a lot of living to be had before then.”

 
The University of Sydney

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