Progression of Fronto-temporal dementia

Discussion in 'I care for a person with dementia' started by Anna40Anna, Jul 31, 2015.

  1. Anna40Anna

    Anna40Anna Registered User

    May 13, 2015
    5
    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
     
  2. Skyrim

    Skyrim Registered User

    Jun 19, 2015
    37
    Progression of dementia

    Hi,
    You don't seem to be getting much by way of response ....probably because Pick's is one of the rarer forms of dementia but possibly because, really, everyone's dementia is unique to them and therefore, so is their pathway. Having worked in care homes, mainly with people with dementia, for about 4 years, I can honestly say it would be impossible to predict what happens when. I'm sorry.

    This site has some factual information on fronto-temporal/Pick's dementia which I would guess you've aready looked at. If you want 1-1 support or information, I'd suggest you contact the Older People's mental health team in your area and ask if any of the CPN's has experience they could share with you. or Admiral Nurses....I've found them t be amazingly supportive on other issues.

    As I said earlier, it is so hard to generalise because I have seen people with moderate dementia pass away from another ailment but also watched others whose dementia has progressed while the body has remained physically well. Try not to get over-anxious, it won't help you at all. Try to get the information you want but use it as you need and take each day as it comes. All the best.
     
  3. Anna40Anna

    Anna40Anna Registered User

    May 13, 2015
    5
    Thanks, Skyrim, good of you to reply.

    Anna
     
  4. Countryboy

    Countryboy Registered User

    Mar 17, 2005
    1,427
    Male
    Cornwall
    #4 Countryboy, Aug 5, 2015
    Last edited: Aug 5, 2015
    Hi frontal-temporal-dementia is one of the many types of dementia not sure it’s a rare form of dementia though I myself got a diagnoses of Fronto-temporal-dementia been living fairly well with it for 16 years since the diagnoses possibly a lot longer un-diagnosed , I also attend group meetings every month organized and run by the Alzheimer’s Society there were eight members all with dementia of that five were diagnosed with Fronto-temporal-dementia all 70+ years old all still driving themselves to the meetings it may not help but we all know that Dementia progression isn’t the same for everyone
     

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