Hi there,
Dad was diagnosed a year ago with fronto-temporal dementia, aged 70, and I'm wondering if there are others who can share how this more rare type of dementia has progressed with their own relative? The doctors and consultant have been open about the 3-8 year life expectancy (though we don't know how far along Dad is). They are naturally reluctant to give much practical advice on what may happen next, but it would be such a help to Mum and the rest of us to hear some stories of how it was in your family.
For example, in the last 3 months Dad's become completely incontinent (from completely independent toilet visits at start of year). He can still get about from bedroom to kitchen and around the house. He goes outside and just sits in the car for an hour at a time (we open windows on warm days). He responds to one of us coming to bring him for meals, but at the table his hands remain beneath the table and his brain doesn't seem to direct him to eat. Mum helps him with food. He's starting to have trouble swallowing his tablets. He recognises his family but can't name us, and in the last few months has stopped asking any proactive conversation - just repeats the question he's been asked and may answer it with the same words so that you're not sure how much his brain has processed.
Dad has the behavioural variant of FTD, so this came with the typical symptoms of craving junk food (looking for biscuits and cake 5 or 6 times between meals) and disinhibition (asking absolutely anyone about their sex life, for example) but this has all passed now and there seems to have been a big slump. We're just not sure what to expect next - so any experiences shared would help.
Mum says the consultant saw a big change since Easter, and he mentioned that although Dad is still physically strong, if he had a fall he would not bounce back easily. Does this mean he could dip further to the next level quickly? What is the next level, even? Bed bound? Chair bound? Unable to eat? Would like to learn more here.
Thanks
Anna
Dad was diagnosed a year ago with fronto-temporal dementia, aged 70, and I'm wondering if there are others who can share how this more rare type of dementia has progressed with their own relative? The doctors and consultant have been open about the 3-8 year life expectancy (though we don't know how far along Dad is). They are naturally reluctant to give much practical advice on what may happen next, but it would be such a help to Mum and the rest of us to hear some stories of how it was in your family.
For example, in the last 3 months Dad's become completely incontinent (from completely independent toilet visits at start of year). He can still get about from bedroom to kitchen and around the house. He goes outside and just sits in the car for an hour at a time (we open windows on warm days). He responds to one of us coming to bring him for meals, but at the table his hands remain beneath the table and his brain doesn't seem to direct him to eat. Mum helps him with food. He's starting to have trouble swallowing his tablets. He recognises his family but can't name us, and in the last few months has stopped asking any proactive conversation - just repeats the question he's been asked and may answer it with the same words so that you're not sure how much his brain has processed.
Dad has the behavioural variant of FTD, so this came with the typical symptoms of craving junk food (looking for biscuits and cake 5 or 6 times between meals) and disinhibition (asking absolutely anyone about their sex life, for example) but this has all passed now and there seems to have been a big slump. We're just not sure what to expect next - so any experiences shared would help.
Mum says the consultant saw a big change since Easter, and he mentioned that although Dad is still physically strong, if he had a fall he would not bounce back easily. Does this mean he could dip further to the next level quickly? What is the next level, even? Bed bound? Chair bound? Unable to eat? Would like to learn more here.
Thanks
Anna