Do you have a parent with an inheritable type of dementia?

Since my diagnosis of dementia 7 years ago next month, I’ve been fortunate to meet the most wonderful people; people I would never had had the good fortune to meet otherwise. Most of these people have become good friends. It’s no secret I call other people with dementia my second family, but professionals too have become dear friends, one of whom is Professor Pat Sikes.

I met Pat initially through being an Alzheimers Society Research Network volunteer on her project with Dr Mel Hall – the project was looking at the experience of children and young people with a parent with dementia diagnosis has on young people of family members.. The study had its origins in the experiences of Pat’s own family.

 You can read more about that here:

https://www.sheffield.ac.uk/education/research/crit-psychology/dementia

Since then we have become lovely friends who rarely see one another, but when we do, smother each other in hugs, however we email regularly with news and share each other’s ups and downs. 

So when Pat emailed me, asking if I would blog about her current research, how could I refuse? 

The study is being carried out in the US and UK so anyone who has had a parent with an inheritable type of dementia can take part. They’re looking at the comparisons between the two health care systems.This will hopefully enable you to express your views around genetic testing to allow better support to be created…..

Once again, it’s such an important study – they are interested in understanding the impact on children who are now 18 years of age or older of having or had a parent with an inheritable type of dementia and their thoughts about genetic testing in order to better support such individuals. Pat and Mel are joining with Dr Caroline Gelman from Hunter College which is part of the City of New York University to explore the thinking of young people  who are at risk of inherited dementias around genetic testing. If you – or someone you know, is in this group you may be interested in participating in this study. Contact details are given in the attached flyer – you may have to zoom in to read the content but I couldn’t make it bigger so I’ve copied the contact details below  so you can just click on their email address🙄. 

As on the poster, If you are in the UK please contact Pat in the first instance – p.j.sikes@sheffield.ac.uk

In the US contact Caroline – cgelman@hunter.cuny.edu

If you don’t consider taking part in research how can we change the future…..?

About wendy7713

On the 31st July 2014 I was diagnosed with Young Onset Dementia. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

6 thoughts on “Do you have a parent with an inheritable type of dementia?

      1. They told us very little at the Memory Clinic diagnosis – only that it was vascular dementia. Thank you very much for your reply, and I will follow it up.

        Lovely rose on your pics this morning. That might have been a Spitfire plane overhead?

        Maureen

        Liked by 1 person

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