Question via email:
"My wife was diagnosed with early onset, frontotemporal dementia 5 years ago. The diagnosis specified the need for future scans, reviews and assessments but none have taken place so far as I am aware.
On three occasions since 2019 my wife has been discharged back to our GP without explanation (e.g. criteria). On each occasion I objected and the "threat" was withdrawn. The main points that I made were failure to comply with own diagnosis, CQC, Ombudsman and Care Act (person-centred treatment). Our GP's practice has little or no experience or knowledge of dementia.
I am aware that Dementia is currently incurable, but I am determined that my wife should have the best possible care, support and advice for the rest of her life. What do you suggest?
Kind regards"
Simon's answer:
Hi,
Thanks for your question, and I’m really sorry to hear you’ve had such a bad experience with your memory service and GP.
I think it’s fair to say that it sounds as if communication may be a major problem with this situation – that the memory service have not explained what their role is and how the whole process of dementia diagnosis and post-diagnostic support works. I’d recommend taking a look at our information resources on this, which explain what typically happens in most places (although there’s often lots of variation between services in the smaller details).
The main functions of memory services are to (a) carry out detailed assessments of a person with possible dementia and provide a timely, clear and accurate diagnosis, and then (b) provide support for a relatively brief period after the diagnosis to allow the person to adjust to their diagnosis. This can involve optimising medication (although not for FTD, for which there aren’t any symptom-modifying drugs, I’m afraid), cognitive stimulation therapy (CST), and psychotherapy to help them come to terms with their condition.
Memory services aren’t normally set up to provide ongoing healthcare and dementia support once this initial post-diagnostic phase is over. Instead, most people are handed over to the care of their GP (for everyday healthcare concerns and referrals to specialists where appropriate), older people’s mental health services (OPMH, for assessing and treating any changes in dementia symptoms), and local dementia support services like Alzheimer’s Society (for information, activity groups, and general troubleshooting).
In terms of practical advice, my first port of call would be to ask for a letter in plain English that sets out your wife’s diagnosis and care plan. It’s not enough to say that she just has young-onset FTD, that there are no drugs available, and then discharge back to the GP. She should at least have been offered post-diagnostic CST and signposted to local and national sources of information and support. One that particularly comes to mind is Rare Dementia Support, an excellent charity who run FTD support groups and have lots of expertise in this condition. Your local Dementia Support service should also be able to refer you to groups and activities designed for younger people with dementia, since younger people tend to have very different needs than most people with late-onset dementia.
Secondly, I’d be interested to know the reasons why the memory service initially proposed having follow-up scans or other assessments? Was there some doubt about the diagnosis? Do you feel that your wife’s symptoms have worsened over the 5 years since? If not, and her symptoms seem to have either stabilised or improved, it would definitely be worth asking for a follow-up reassessment on grounds of non-progression. A dementia diagnosis isn’t always set in stone – particularly in younger people – so if the symptoms haven’t progressed as you would expect then do ask for a follow-up.
If your wife’s symptoms have progressed as one would expect, then it’s still important that she should receive an annual review with her GP. I know you don’t have much faith in your GP’s ability to manage FTD (not many GPs know a great deal about FTD, I’m afraid) but these annual reviews can be a good opportunity to check that your wife’s day-to-day medical care is working as well as possible. This can involve a medication review to make sure no other drugs she’s taking might be making her dementia symptoms worse, addressing any changes in symptoms that might be managed medically or need referral to a specialist, organising advance care planning, or accessing support for you as a carer. You may well need to actively request an annual review though, rather than wait to be invited.
Lastly, I’m assuming your wife was diagnosed with behavioural variant FTD as this is the most common type. However, if she has a different type that involves mostly language problems, known as primary progressive aphasia (PPA), then she should be able to get support from a local speech and language therapist who can help them to keeping communicating as well as possible. Also, Rare Dementia Support have support groups specifically for
people with PPA.
I hope this helps.
Best wishes,
Simon
"My wife was diagnosed with early onset, frontotemporal dementia 5 years ago. The diagnosis specified the need for future scans, reviews and assessments but none have taken place so far as I am aware.
On three occasions since 2019 my wife has been discharged back to our GP without explanation (e.g. criteria). On each occasion I objected and the "threat" was withdrawn. The main points that I made were failure to comply with own diagnosis, CQC, Ombudsman and Care Act (person-centred treatment). Our GP's practice has little or no experience or knowledge of dementia.
I am aware that Dementia is currently incurable, but I am determined that my wife should have the best possible care, support and advice for the rest of her life. What do you suggest?
Kind regards"
Simon's answer:
Hi,
Thanks for your question, and I’m really sorry to hear you’ve had such a bad experience with your memory service and GP.
I think it’s fair to say that it sounds as if communication may be a major problem with this situation – that the memory service have not explained what their role is and how the whole process of dementia diagnosis and post-diagnostic support works. I’d recommend taking a look at our information resources on this, which explain what typically happens in most places (although there’s often lots of variation between services in the smaller details).
The main functions of memory services are to (a) carry out detailed assessments of a person with possible dementia and provide a timely, clear and accurate diagnosis, and then (b) provide support for a relatively brief period after the diagnosis to allow the person to adjust to their diagnosis. This can involve optimising medication (although not for FTD, for which there aren’t any symptom-modifying drugs, I’m afraid), cognitive stimulation therapy (CST), and psychotherapy to help them come to terms with their condition.
Memory services aren’t normally set up to provide ongoing healthcare and dementia support once this initial post-diagnostic phase is over. Instead, most people are handed over to the care of their GP (for everyday healthcare concerns and referrals to specialists where appropriate), older people’s mental health services (OPMH, for assessing and treating any changes in dementia symptoms), and local dementia support services like Alzheimer’s Society (for information, activity groups, and general troubleshooting).
In terms of practical advice, my first port of call would be to ask for a letter in plain English that sets out your wife’s diagnosis and care plan. It’s not enough to say that she just has young-onset FTD, that there are no drugs available, and then discharge back to the GP. She should at least have been offered post-diagnostic CST and signposted to local and national sources of information and support. One that particularly comes to mind is Rare Dementia Support, an excellent charity who run FTD support groups and have lots of expertise in this condition. Your local Dementia Support service should also be able to refer you to groups and activities designed for younger people with dementia, since younger people tend to have very different needs than most people with late-onset dementia.
Secondly, I’d be interested to know the reasons why the memory service initially proposed having follow-up scans or other assessments? Was there some doubt about the diagnosis? Do you feel that your wife’s symptoms have worsened over the 5 years since? If not, and her symptoms seem to have either stabilised or improved, it would definitely be worth asking for a follow-up reassessment on grounds of non-progression. A dementia diagnosis isn’t always set in stone – particularly in younger people – so if the symptoms haven’t progressed as you would expect then do ask for a follow-up.
If your wife’s symptoms have progressed as one would expect, then it’s still important that she should receive an annual review with her GP. I know you don’t have much faith in your GP’s ability to manage FTD (not many GPs know a great deal about FTD, I’m afraid) but these annual reviews can be a good opportunity to check that your wife’s day-to-day medical care is working as well as possible. This can involve a medication review to make sure no other drugs she’s taking might be making her dementia symptoms worse, addressing any changes in symptoms that might be managed medically or need referral to a specialist, organising advance care planning, or accessing support for you as a carer. You may well need to actively request an annual review though, rather than wait to be invited.
Lastly, I’m assuming your wife was diagnosed with behavioural variant FTD as this is the most common type. However, if she has a different type that involves mostly language problems, known as primary progressive aphasia (PPA), then she should be able to get support from a local speech and language therapist who can help them to keeping communicating as well as possible. Also, Rare Dementia Support have support groups specifically for
people with PPA.
I hope this helps.
Best wishes,
Simon
