Twelve months ago my wife was diagnosed with Frontotemporal Dementia at the age of 64. So far as I have managed to find out, this is the upper end of the age range for this form of dementia which accounts for a very small percentage of dementia cases. Whilst remaining very fit physically and articulate, she has significant cognitive impairment making genuine conversation impossible, has become childish, impulsive and very self-centered. A far cry from the person who used to design and make teaching aids for children with learning difficulties and could project manage the family through almost anything. We are fortunate to have the support of our two daughters and families who live close but I am finding it very difficult to cope with the enormous change. The support groups we have spoken thus far are dealing with the more familiar types of dementia and an age group in their late 70s and 80s. Does anyone have any experience FTD with whom I amy be able to share experiences?
Coming to terms
- Thread starter Aitch52
- Start date
Hello @Aitch52 Welcome to Dementia Talking Point.
From the posts I have read on this forum, it looks as if there is a high percentage of younger people with dementia who have FTD.
It is very difficult to find support groups for younger people with dementia / I hope some members will post tomorrow and tell you how they have managed.
Have you tried the following links?
www.alzheimers.org.uk
www.alzheimers.org.uk
The pandemic means the support services are not yet back to normal and this has made it even more difficult.
From the posts I have read on this forum, it looks as if there is a high percentage of younger people with dementia who have FTD.
It is very difficult to find support groups for younger people with dementia / I hope some members will post tomorrow and tell you how they have managed.
Have you tried the following links?
Find support near you
Use our dementia directory to find local support services for people with dementia and their carers in England, Wales and Northern Ireland.
www.alzheimers.org.uk
Your local dementia support services
We are here to help. Find out more about the type of dementia support services available in your area.
www.alzheimers.org.uk
The pandemic means the support services are not yet back to normal and this has made it even more difficult.
Hi Aitch52
I am also coming to terms with my husband’s diagnosis of Behavioural Variant FTD which was confirmed in August.
We were referred to the Rare Dementia Society by the neurologist, their support groups have been held online since COVID but have started some face to face, I attended my first support group at the beginning of October.
If you google Rare Dementia Society you will find the website with all their info and a calendar with online group dates and face to face.
I cared for my mother with Vascular dementia, but dealing with my husband with BvFtd is a totally different experience and one that I am struggling with.
I am also coming to terms with my husband’s diagnosis of Behavioural Variant FTD which was confirmed in August.
We were referred to the Rare Dementia Society by the neurologist, their support groups have been held online since COVID but have started some face to face, I attended my first support group at the beginning of October.
If you google Rare Dementia Society you will find the website with all their info and a calendar with online group dates and face to face.
I cared for my mother with Vascular dementia, but dealing with my husband with BvFtd is a totally different experience and one that I am struggling with.
Never heard of that group so many thanks for the info. I have no experience of dementia of any type but people who have tell me that my wife's symptoms are substantially different. Thanks again.
Thank you very much, I truly need to communicate with other care givers dealing with the issues of FTD.
