Newly Diagnosed wi

Maggiejigs

Registered User
Apr 22, 2018
81
0
Well after 9 months of waiting for tests and final diagnosis meeting with Consultant my husband - who is 75 next month - has been diagnosed with Frontotemporal Dementia. However the consultant psychiatrist stated she was seeking a second opinion from a Neurologist given unusual history and brain scan being reported as mild-moderate diffuse atrophy. The Consultant said she would get back to us once she had feedback from Neurologist, but today we have had a letter from local hospital Neurology Dept advising they have been requested by our GP to organise an appointment with Consultant Neurologist with shortest waiting list! My GP did not request this so can only assume the Consultant Psychiatrist has done so?

We had a Post Diagnostic meeting and I was given to understand we would be seeing an Admiral Nurse and did not realise until couple of weeks after the meeting that we had actually been seen by a Therapy Technician. We were given loads of information but I really came away with more questions than answers. Sorted the info into - Age UK, Age Concern, Involve Carers, Crossroads, Dementia UK, CROP etc. but didn’t know where to start with contacting any of the organisations.

My husband is not really that much different to what he was a year ago when he started suffering from paranoia except he did ask my friend several times, when we were on a week’s holiday, if she wanted to have sex with him. Also asked me when I thought she would want to have sex with him. Thankfully she is a great friend and totally understanding of the situation. Apart from that, the continuing paranoia and the odd thought that he is going to Scotland life goes on. He did a driving assessment last week and passed with flying colours so can drive for another 6 months. I notice though he does shuffle sometimes and makes noises as if some things are an effort.

In a roundabout way we have now been advised an Admiral Nurse will contact us. Turns out we should have been advised of this at post diagnostic meeting. I know I will become my husband’s carer eventually - and I am not burying my head in the sand here - but not sure if I need to be contacting any of these agencies just yet although have been in touch with Involve Carers and may go to Alzheimer’s Dementia cafe next week.

I tried to enrol my husband in Cognitive Stimulation Therapy at our local NHS Memory Clinic but was told that they did not think it was suitable for him and he should apply for 1-1 at Alzheimer’s Society COGS. I am now wondering if it is going to be worth trying to get husband into any groups as I believe it will be his disinhibition in the future which will exclude him.

I live in Kent and am finding there are no FTD Support Groups in the County although East Sussex is a possibility and much preferable to going to London but if needs must then I will go to London. I really want to meet people in the same boat as myself and wondering if anyone knows of any way of doing just that in Kent - maybe buddying up with someone, or is that a complete NO NO.

Sorry for all the waffle
 

Maggiejigs

Registered User
Apr 22, 2018
81
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Thanks for the link ‘’jaymor’’ and I think I have all the information that is out there and am slowly working my way through it - it is overwhelming. I have also found the Dementia Friendly Kent website.

Perhaps if there were others out there in Kent with partners/spouses with FTD we could start our own support group??
 

nae sporran

Registered User
Oct 29, 2014
9,213
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Bristol
Thanks for the link ‘’jaymor’’ and I think I have all the information that is out there and am slowly working my way through it - it is overwhelming. I have also found the Dementia Friendly Kent website.

Perhaps if there were others out there in Kent with partners/spouses with FTD we could start our own support group??

The Carers Trust have a centre in Kent who may run a support group, certainly the Bristol centre runs a couple. https://carers.org/partner/carers-first-kent-medway will take you to their site if you want to ask about it.
 

Philbo

Registered User
Feb 28, 2017
853
0
Kent
Hi @Maggiejigs

My wife has FTD (diagnosed Jan 2014) and we live in East Kent (Thanet).

I can thoroughly recommend Crossroads (respite visitor comes for 3 hours every Monday - long waiting list, so worth getting on now, for when you need it?). I found them to be very good at signposting other organisations who can support both the PWD and carers.

Also found Carer Support very good (they can do carer assessment on behalf of local authority) https://www.carers-supportcdt.org.uk/

Care Navigator Services
http://dementiafriendlykent.org.uk/my-area/services/care-navigators/

Hope this helps.
Phil
 

Maggiejigs

Registered User
Apr 22, 2018
81
0
Thanks again for links above - some new ones to look at. Phil - I emailed Crossroads a few weeks ago rather than bother them with a phone call but as I haven’t heard from them I will now call them - apparently 18 month waiting list here!