Does anyone have any stories about relatives with FTD ? Frontotemporal dementia ?

[anystoriez]

I have a relative who may be showing signs of the behavioural variant, but it’s tough to pin down. Does anyone have any stories, examples of behaviour ?

we have just noticed a lot of reckless behaviour, a lot of spending and uncharacteristic stuff over the last few years. At first we thought it was a midlife crisis, but it seems like more than that.

What age is your relative? I have a relative with bipolar disorder and spending and reckless behaviour really jumped out to me as typical of their behaviour while having a manic episode. Does your relative have periods of elevated moods followed by periods of low mood/depression?

My mother has FTD (semantic initially but it all ends up in the same place tbh). She is very late stage now but she had a number of reckless behaviours before and after diagnosis. And she was definitely very spendy (though in fact she was always a bit like this). If you have questions, I would be happy to answer. The only real way to diagnose is a brain scan and full assessment by someone experienced in the field. It is a very cruel condition and I would not wish it on anyone. Very hard for family members.

There are plenty of lists of symptoms online, and I had worked out that this was what was going on with my mother long before she was finally diagnosed.

No personal experience, but I'm a mental health nurse for older adults (so I do plenty of memory assessments!), so I have professional experience.

With FTD, the most common things are significant personality changes (e.g. it can make people very cruel, and very disinhibited). You can see people become aggressive, or being publically inappropriate by removing clothes/peeing, etc. Self-neglect is common. And very significant changes to language ability. Both in terms of processing language and using language. I had a patient where the only real language he had left was saying 'that's a big one'.

Unlike other dementia subtypes, the memory decline comes a bit later. Language will decline first. With other dementia types it is the opposite way around.