I have turned to this forum as a last resort and would greatly appreciate any advice from anybody who has been through a similar situation.
Since January this year my dad has been having tests for dementia after presenting with some short-term memory problems and, most significantly, personality and behavioural changes..He's 56 and had a heart attack in Dec 2013. Summary of tests as follows;
- CT scan (normal)
- referral to general specialist who assessed him from top to toe. Confirmed nothing physically wrong but 'quite likely' he has an early dementia. Suggested GP makes appropriate referrals for an MRI scan and to memory clinic
- MRI scan abnormal, GP told us it shows cerebral atrophy and memory clinic will tell us more info
- Waited several weeks for assessment at memory clinic. After assessment (various tests and questionnaires) told the next stage would be to see a consultant at the memory clinic who would use all of the above info to make a diagnosis
- Finally had appointment yesterday to be told that the consultant doesn't know what is wrong and the MRI is normal (shows atrophy of cranium which is most likely an incidental finding as dad's balance etc not affected and doesn't explain his main symptoms)
- Consultant said he will arrange for further tests (PET scan and neuropsychological assessment) but mentioned the wait list is very long and it could be 6 months before we have any clairty, and told us there is no point in rushing...
Mum and I (and dad) came away from this appointment none the wiser and totally frustrated. Consultant did not seem to appreciate the daily difficulties we are facing and had absolutely no sense of urgency and when I asked what we could do in the mean time (considering day to day emotional and financial strains of care) he just said he didn't know and couldn't help us.
My dad's behaviour and personality has changed significantly compared to recent years and especially over the past 7 months. He can barely hold a conversation and has minimal social awareness and often behaves inappropriately, which is just not like him. He has not been working since December and there is no way he could manage a job or even get through an interview.
I'm wondering if anyone has had similar difficulties with a) getting a diagnosis and b) getting the consultants to acknowledge how bad a patient is despite assessments and the scan not being too concerning? How did you get the doctors to listen?
The hospital that we have been sent to is very much for 'older patients' and the consultant in fact said he's only used to seeing people who are 75+. Can anyone recommend a hospital or doctor who is good with Young/early onset dementia patients?
Apologies for the rambling!
S
Since January this year my dad has been having tests for dementia after presenting with some short-term memory problems and, most significantly, personality and behavioural changes..He's 56 and had a heart attack in Dec 2013. Summary of tests as follows;
- CT scan (normal)
- referral to general specialist who assessed him from top to toe. Confirmed nothing physically wrong but 'quite likely' he has an early dementia. Suggested GP makes appropriate referrals for an MRI scan and to memory clinic
- MRI scan abnormal, GP told us it shows cerebral atrophy and memory clinic will tell us more info
- Waited several weeks for assessment at memory clinic. After assessment (various tests and questionnaires) told the next stage would be to see a consultant at the memory clinic who would use all of the above info to make a diagnosis
- Finally had appointment yesterday to be told that the consultant doesn't know what is wrong and the MRI is normal (shows atrophy of cranium which is most likely an incidental finding as dad's balance etc not affected and doesn't explain his main symptoms)
- Consultant said he will arrange for further tests (PET scan and neuropsychological assessment) but mentioned the wait list is very long and it could be 6 months before we have any clairty, and told us there is no point in rushing...
Mum and I (and dad) came away from this appointment none the wiser and totally frustrated. Consultant did not seem to appreciate the daily difficulties we are facing and had absolutely no sense of urgency and when I asked what we could do in the mean time (considering day to day emotional and financial strains of care) he just said he didn't know and couldn't help us.
My dad's behaviour and personality has changed significantly compared to recent years and especially over the past 7 months. He can barely hold a conversation and has minimal social awareness and often behaves inappropriately, which is just not like him. He has not been working since December and there is no way he could manage a job or even get through an interview.
I'm wondering if anyone has had similar difficulties with a) getting a diagnosis and b) getting the consultants to acknowledge how bad a patient is despite assessments and the scan not being too concerning? How did you get the doctors to listen?
The hospital that we have been sent to is very much for 'older patients' and the consultant in fact said he's only used to seeing people who are 75+. Can anyone recommend a hospital or doctor who is good with Young/early onset dementia patients?
Apologies for the rambling!
S
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