Can Alzheimers Disease really be mis-diagnosed?

[Holsworthy]

Ive read just about everything I can find on the web about the possibility of being mis-diagnosed with AD. My father was diagnosed with AD earlier this year. He already has vascular dementia and a heart condition. Following him 'disowning' his family, stating that he will be permanently living with a 'friend' he was visiting, revoking LPoA held by my brother and I, solicitors letter accusing us of neglect and theft, we have been advised that he passed a test with a new doctor where he is now living and he doesn't have AD at all and was in fact mis-diagnosed. I am trying to get this validated via his solicitor at the moment but need to know if AD can be mis-diagnosed? There is nothing to confirm or refute that I can find. Any advice/guidance would be very much appreciated.

 

[cragmaid]

Hello. The only definitive test for Alzheimer's disease is, I believe, a post-mortem. So to answer your question, yes AZ can be wrongly diagnosed, but it is usually because a different form of the illness is apparant. Equally so one can have a diagnosis of more than one type...i.e my late Mum had Mixed AZ and Vascular Dementia.
Who has advised you of this recent change in your Dad's status? If it was Dad, he may, of course be confabulating, and if it was his "friend" there could be an ulterior motive.

 

[Spamar]

I can't help you very much, but would like to point out that if he already has vas dem, with no one arguing about that diagnosis, he still has dementia. My OH had both! Signs and symptoms are similar, the disease may progress at different rates. Nothing, except keeping cholesterol and blood pressure in order, can be done for vas dem, and donepezil will slow down Alzheimers in people who can tolerate the drug. So exact diagnosis is not required.
However, if gp has said there is no dementia at all, then the steps your father has taken will be difficult to alter. However, diagnosis is usually by a consultant, not a GP, unless things have changed recently.

 

[Spamar]

Crossed with cragmaid!

 

[Holsworthy]

Hello. The only definitive test for Alzheimer's disease is, I believe, a post-mortem. So to answer your question, yes AZ can be wrongly diagnosed, but it is usually because a different form of the illness is apparant. Equally so one can have a diagnosis of more than one type...i.e my late Mum had Mixed AZ and Vascular Dementia.
Who has advised you of this recent change in your Dad's status? If it was Dad, he may, of course be confabulating, and if it was his "friend" there could be an ulterior motive.

My dad already had been diagnosed a few years ago with Vascular Dementia and he also has a heart condition. It was my dad that told my aunt and my niece about the mis-diagnosis. I want a copy of the report, I want to know if he was wearing Rivastigmine patch when he completed the test if indeed he did. The memory clinic where he was diagnosed originally are unable to help because of patient confidentiality. When he rang my aunt two days ago, completely out of character as he never phones anyone outside immediate family, he asked her the date my mum passed away. My aunt told him the date and he then said of course, 23 April 2016 - my mum died last year! We do wonder if he is 'revising' for a test which is coming up not actually had.

 

[Holsworthy]

I can't help you very much, but would like to point out that if he already has vas dem, with no one arguing about that diagnosis, he still has dementia. My OH had both! Signs and symptoms are similar, the disease may progress at different rates. Nothing, except keeping cholesterol and blood pressure in order, can be done for vas dem, and donepezil will slow down Alzheimers in people who can tolerate the drug. So exact diagnosis is not required.
However, if gp has said there is no dementia at all, then the steps your father has taken will be difficult to alter. However, diagnosis is usually by a consultant, not a GP, unless things have changed recently.

Yes, dementia in whatever form. Since wearing Rivastigmine patches, Dad has been very lucid although I wonder that whilst most of the symptoms have been alleviated, some may be exaggerated. He has become very argumentative of late, has become very suspicious of his family and wont have any contact with us except through his solicitor.

 

[sleepless]

We do wonder if he is 'revising' for a test which is coming up not actually had.

I think it highly unlikely that the date of his wife's death would be asked in any test. The questions are usually ones to which the consultant would know the correct answer eg. Date of birth of the patient.
Could the 'friend' have been wanting to know this information?
Was POA registered with the Office of the Public Guardian?

 

[Kevinl]

Yes, it is possible to be misdiagnosed is the short answer, diagnosis of AZ is as much a matter of opinion backed up by tests.
You do have to bear in mind though that a diagnosis of AZ is not proof that the person concerned lack capacity, many on here who have AZ post some very interesting and entertaining posts, have a look at the "I have dementia" section of the forum.
Whilst he still has capacity he is free to do as he wishes as are we all.
Sadly, I believe the subtext here is that you're concerned the "friend" may take advantage of the situation and is using undue influence over him.
It's a very difficult situation and I do sympathise with you, but he is free to do as he wants and there's very little you can do about it as far as I know.
Sorry if that's not what you wanted to hear.
K

 

[sleepless]

there's very little you can do about it as far as I know.

K

Except worry of course.
Any estrangement is upsetting, but when the person probably has dementia, very worrying too.
If it was my dad I would be concerned for his well-being, as I'm sure is the case with Holsworthy.
Difficult situation, but I would suggest you try to keep some sort of channel of communication open if you can.

 

[Holsworthy]

I think it highly unlikely that the date of his wife's death would be asked in any test. The questions are usually ones to which the consultant would know the correct answer eg. Date of birth of the patient.
Could the 'friend' have been wanting to know this information?
Was POA registered with the Office of the Public Guardian?

Yes, POA was registered with OPG BUT can be revoked at any time. To be honest, I really dont think its worth the paper its written on. Ive spoken to OPG twice since and there is nothing we can do except re-register it, dad can then revoke again, we can re-register, dad can revoke again........... The 'friend' possibly could want this infomation but could easily ask my dad - the problem is he doesnt know! Im certain of that.

 

[Holsworthy]

Yes, it is possible to be misdiagnosed is the short answer, diagnosis of AZ is as much a matter of opinion backed up by tests.
You do have to bear in mind though that a diagnosis of AZ is not proof that the person concerned lack capacity, many on here who have AZ post some very interesting and entertaining posts, have a look at the "I have dementia" section of the forum.
Whilst he still has capacity he is free to do as he wishes as are we all.
Sadly, I believe the subtext here is that you're concerned the "friend" may take advantage of the situation and is using undue influence over him.
It's a very difficult situation and I do sympathise with you, but he is free to do as he wants and there's very little you can do about it as far as I know.
Sorry if that's not what you wanted to hear.
K

Yes, we are concerned for his well being, apart from his mental capacity he has a heart condition. We are certain he is being 'taken in' , coerced by this 'friend' he has known for some 20+ years. He certainly isnt behaving 'normally', its very very out of character even if he hasnt got AD. There is nothing we can do except wait for this 'friend' to use and abuse him financially and then dump him. He told his solicitor to advise us that if we visit him, the police will be called as he will fear for his safety. We are sick with worry

 

[Holsworthy]

Except worry of course.
Any estrangement is upsetting, but when the person probably has dementia, very worrying too.
If it was my dad I would be concerned for his well-being, as I'm sure is the case with Holsworthy.
Difficult situation, but I would suggest you try to keep some sort of channel of communication open if you can.

Absolutely, worry is all we can do. He has shut all channels of communication, threatening police action to all of us, including his grandchildren. We just want him back home with us

 

[jan.s]

Alongside the usual tests at the memory clinic, my husband was diagnosed from an MRI scan. This showed the areas of the brain that had been affected. I hope things work out for you .

 

[Holsworthy]

Alongside the usual tests at the memory clinic, my husband was diagnosed from an MRI scan. This showed the areas of the brain that had been affected. I hope things work out for you .

thank you for your comments/advice. I fear we have lost him

 

[Holsworthy]

Hi. not posted for a while but have been logging in occasionally. You all have so much to deal with but I thought I'd give the latest developments on my dad. Its been a very emotional time as we ave received two letters from dads solicitor where dad has told him that I have stolen several hundreds of thousands pounds from him - this money was moved from his current account when he sold the family home, to an account in mine and my brother names as we were instructed by him to buy a house in our names to rent out, to increase his monthly income. He has accused us of locking him in the annexe he lived in at my brothers house, feeding him three times a week, no heating, not allowed out etc. He told his solicitor that he wasnt invited to family gatherings, or welcome in the adjoining house. You can imagine how upsetting this has been, its all so far from the truth. He couldnt have been visited, fed, taken out, included in family gatherings more. Even my parents very best friends of over 60 years that visited him and took him out for lunch regularly are stunned. Friends at his club that we regularly took him to cant believe these lies. These are just some of the accusations made. This has to be due to grooming from his 'friend' but we have no proof. This is so not like my dad, we know what the disease does to the brain but he is on rigvastimine patches and appears very lucid (hence the revocation of the LPOA). Dads birthday is coming up and Christmas isn't far away, we just want this resolved asap. We hae to send his birthday cards to his solicitor to pass on. We have asked for a meeting with just dad and his solicitor and we are waiting for a response. This is the worst time for the whole family, he's been abusive and physically hit my nephew that decided to visit him, saying hes not allowed to talk to us. Who said that, why? Has anyone been in a similar situation? We are at our wits end and is making my brother, sister in law and myself ill with worry.

 

[canary]

Unfortunately delusions are very common with dementia.
I first realised that there were big problems with mum when she suddenly started accusing a very old and dear friend of hers of stealing from her and saying that she didnt want her in her house any more. Needless to say, this friend wasnt stealing from her at all and was horrified about the whole situation. Not long after she started accusing me to stealing from her too. I think think this is very common.
It may not be that this friend has "groomed" your dad. It may be that the friend has been completely taken in by your dads seeming lucidity and is trying to support him - not understanding the damage he is doing. It is difficult to tell what the motive is. I know how hurtful this sort of situation is.

 

[Holsworthy]

Unfortunately delusions are very common with dementia.
I first realised that there were big problems with mum when she suddenly started accusing a very old and dear friend of hers of stealing from her and saying that she didnt want her in her house any more. Needless to say, this friend wasnt stealing from her at all and was horrified about the whole situation. Not long after she started accusing me to stealing from her too. I think think this is very common.
It may not be that this friend has "groomed" your dad. It may be that the friend has been completely taken in by your dads seeming lucidity and is trying to support him - not understanding the damage he is doing. It is difficult to tell what the motive is. I know how hurtful this sort of situation is.

Thank you for your reply Canary. We do feel this so called friend us grooming him. She has financial difficulties and has gone through the asking for help stage, then it was tears, and then inviting him to stay, making a huge fuss of him, lots of attention and flattery, (dad loves all that) the hugs, etc. Classic grooming as far as we've read. The 'grooming' started as soon as dad put his house on the market in February this year and after a few weekends at her house by the coast, he telephoned to say he wasn't coming back and wanted nothing more to do with his entire family. So worrying and very very sad. He could have moved in with her if that's what he wanted, without all this horrendous upset and had us too

 

[Holsworthy]

Beside ourselves with worry

Further to our dad moving away, there has been a lot of accusations, saying we locked him in all day, fed him three times a week only, no heating, wasn't invited to family gatherings etc. So, there has been a lot of upset etc as this us all lies and we can prove he is lying. Maybe hes being told to lie by his 'friend' ? We have concerns about grooming/coercion already. Dads solicitor writes with lies and allegations and it is heartbreaking. Now, he has decided to buy a house where his friend lives using the money from the sale of my parents house before he moved in with my brother. Half of the money from the sale of the house was left by my mum to my brother and I. Dad can't grasp that he cannot spend our money, that it is supposed to be in trust etc. He doesnt seem to understand at all and has told a family friend we can't gave it. Dad is sole executor of my mums will. We understand we can apply to have him removed as executor as not fulfilling the requirements of the will, not mentally capable etc BUT he has been deemed mentally capable which he clearly isn't. He was diagnosed with AD 18 months ago but since being in Rivagstimine patches his symptoms have decreased hugely. Any advice would be greatly appreciated.

 

[canary]

Further to our dad moving away, there has been a lot of accusations, saying we locked him in all day, fed him three times a week only, no heating, wasn't invited to family gatherings etc. So, there has been a lot of upset etc as this us all lies and we can prove he is lying. Maybe hes being told to lie by his 'friend' ? We have concerns about grooming/coercion already.

These are classic dementia delusions. I very much doubt that the friend has coached him to lie - he wouldnt remember to anyway!
I still think that the friend has been "taken in" and is believing everything that he says. I assume it is she who has instructed the solicitor? I have read many threads on here outlining the damage that can be done by a well meaning relative or friend who believes the dementia delusions and tries to "protect" them against their family.
Heartbreaking for you, though

 

[nicoise]

I can understand your reluctance to initiate action to remove your father as executor, especially as he is deemed to have capacity, but equally to indulge him by taking no action could end up with a very difficult situation whereby he thinks he could buy another property and so on....

As things stand right now, you can do no right in his altered thinking, therefore taking action cannot make things any worse.

Equally, you could just take a watchful view for now, and hope that his more extreme ideas will pass, without you needing to challenge him.

Good luck!