Dementia & early onset pd


#1
Dr Walker says in her posts that '80% of those diagonsed with Parkinson's diseas for 20 years or more develop dementia' and 'Time to onset of dementia varies greatly in early-onset Parkinson’s disease. A few people develop dementia very early on and in others it can take more than 20 years for dementia to develop.'

I was diagnosed with pd 15 years ago and had obvious symptoms for 2 years prior to that; I am now 50. According to Dr Walker's comments I have an 80% chance of developing dementia in 5 years, which is scary to say the least. If this is the case, why aren't we better prepared for this by the medics, by Parkinson's UK etc? If I am to develop dementia, I need to make practical preparations for my care and future life etc. As I do not have family members who could be relied upon to accurately reflect my wishes and feelings, it is important that I sort this out whilst I am able, which is actually quite a difficult, complex thing to do when you come to look at it.

Is it the experience of other people that dementia is the outcome for those who have been diagnosed for 20 years or more?

#2
Hi poorna,

Thanks for your comments.

It was exactly to raise the profile of dementia in Parkinson’s that I was hired earlier this year.

We knew that we needed to provide better support around dementia and so Parkinson’s UK in partnership with the Lewy Body Society created my post which is to lead on our dementia programme.

The Q&A was designed to help to raise awareness of the issue and address concerns that people might have. But this is just one of the things we’re doing.

Since February, when I started at the charity we have been working on a new training course for our Information and Support Workers (ISWs) to ensure that knowledge about dementia is passed on to those working directly with people affected by Parkinson’s.

I’ve also started visiting local groups to open the discussion about dementia and am trying to grow the pool of people concerned about and affected by the condition who would be willing to share their experiences.

We know from the high number of hits to our website pages on dementia that many people with Parkinson’s and their carers are very concerned about this potential development of the condition. We’ll also be keeping an eye on the responses you get here.

However the information comes in, we’re keen to hear from people with Parkinson’s and their carers, to help us shape our services and have an impact on wider care and support through the media, campaigns and training of health and social care professionals.

Dementia Awareness Day is 15 September, so now is a particularly good time for people to get in touch. If you’d like to find out more or to share your thoughts you can write to me at cyardley(at)parkinsons.org.uk


Cecilia
Senior Professional Engagement and Partnership Officer

#3
I read that one in five PWP's developed dementia and as that's much the same figure as for dementia in general I wasn't much bothered. There seems to be so much shifting opinion between different authorities about so much related to PD,
long term effects of sinemet, ocd effects of d.a.'s etc etc.

#4
Thanks for your informative reply Cecilia. I'm glad that steps are being taken to heighten awareness of this issue. I suspect that there are lots of people out there who, like me, do not have access to a Younger Person's group and it would be great to think that we can access the information, maybe by having a publication in the Younger people section of the website. As far as I remember the only information about what kind of practical steps and issues might need to be addressed is in the 'Preparing for End of Life' publication, which is not the kind of publication I would think about looking at the age of 50!
I look forward to seeing what emerges!

#5
Dear Poona,

My husband has had PD for thirty years and will be 69years old next month, he still plays scrabble, quiz's and can hold a good conversation and has good general knowledge. The problems he now has are that he doesn't understand the consequences of his action sometimes and he thinks he can do more than he actually can, for example he thinks he doesn't need carer's when he needs 24hour care, it is very subtle really.
You say that you feel that you are too young to be having to deal with all the things you might expect to have to do when you are older, but believe me it is so much better to get these things out of the way, we arranged most of ours when we were just around 50 years and I am so pleased we did as it has made things a lot easier. My husband has also made out a DNR form and on there is also a place to say if you require other medical intervention such as peg feed, he only wants to be kept comfortable and pain free. He has also donated his brain to the Tissue bank for research.
When I was Chair of a branch I always had in the programme a solicitor to come and talk about the these issues as I feel it is so important that you have what you want to take place when the time comes. This could apply to everyone as who knows when a health problems will come, at least you will have everyone you put in print.
As for the dementia, my husband hasn't got that even after all this time, we were always told it was one in four pwp's who would have it. I do think it very important that there is now more researsh about it and perhaps the doctor would say that my husband has a type of dementia but that is not the case so far.
best vivian

#6
Thanks for your helpful reply. It is good to hear that your husband is still mentally alert after 30 years:smile: