Unexpected diagnosis?

[Maria Helen]

Hi all, I’m new here so need a bit of advice. My Mum is in her 70s-still working, driving, no obvious concerns with memory or personality change.
She had a MR head for a completely unrelated issue and we have received a letter to say it shows atrophy consistent with Alzheimer’s Disease.
I have no idea if this is a diagnosis, why this was sent to us by post instead of a discussion and what she should do next.
As a family, this has come completely out of the blue and we are totally shocked. Has anyone been in the situation where there are scan changes but no symptoms and does it always mean AD?

 

[northumbrian_k]

Hi @Maria Helen and welcome to Dementia Talking Point. I can understand how the letter coming out of the blue will have come as a shock. When you say that 'we' have received a letter I guess that you mean that your Mum received it and has shared it with you. Does the letter say anything about how this will be followed up or give any contact details? A good starting point may be for your Mum to speak to her GP. I am sorry that I don't have anything else to suggest but others may be along shortly with more knowledge about unexpected diagnosis arising from MRI.

 

[silkiest]

Hi @Maria Helen ,welcome to the forum, this must be a worrying time for you and your family. Apparently there are studies that have looked at brains postmortem and the degree of changes does not always tally with the effects of Alzheimers - Google "the nuns study". Some people have large changes with very few symptoms and vice versa.
I would make an appointment with your mum to see her GP and take the letter with you so you can discuss what this means and if further investigations are needed. If it is an early diagnosis, early treatment will help to slow any progress in the disease.
We have a member on here who has been diagnosed over 20 years who is still driving and looking after himself so its not all doom and gloom, but at the same time its best to be prepared.
This is an ideal opportunity to discuss with your mum and family how she would like to deal with any possible changes to her health in the future. You need to help her set up Power of Attorneys for both finance and health and register them at the same time. Once the POA's are registered you can help as much or as little as she wishes but don't wait until she needs it as by then it could be too late. You do not need a solicitor to do this and all the information and forms are on the government website at https://www.gov.uk/power-of-attorney . Some solicitors will advise you do not need POA Health as "the professionals will look after her" , but without it no doctors or other health professionals will discuss your mums care with you, and this may be vital in the future.
Financial advisers recommend all adults have POA finance set up - if a person has a severe accident or sudden long term illness and there is no POA in place the court of protection has to be involved which is both costly and stressful. POA finance is very helpful even for people with full capacity - eg if a person is away on holiday and there is a problem with the house and you need to sort something out, the insurance people will only speak to you if you are named on the policy or have POA.

 

[kindred]

Hi all, I’m new here so need a bit of advice. My Mum is in her 70s-still working, driving, no obvious concerns with memory or personality change.
She had a MR head for a completely unrelated issue and we have received a letter to say it shows atrophy consistent with Alzheimer’s Disease.
I have no idea if this is a diagnosis, why this was sent to us by post instead of a discussion and what she should do next.
As a family, this has come completely out of the blue and we are totally shocked. Has anyone been in the situation where there are scan changes but no symptoms and does it always mean AD?

I am so sorry to hear, this must have come as such a shock. Exactly the same thing happened to my husband, a scan for an unrelated issue picked up Alzheimer’s and absolutely no symptoms.
We had a lovely couple of years, albeit this was hanging over us. Then things did start to get worse and then very bad. He died five years after the original diagnosis.
It came out of the blue for us to. I do wish you well. Kindred.

 

[jaymor]

Very similar with my husband. My husband had a slight memory problem that we both put down to stress of working non stop, he truly was a workaholic. We both thought he needed medication to help him relax. The doctor decided on several test , an MRI scan being one of them.

The tests plus the scan gave us Alzheimers and for four years other than Alzheimers being a word now in our lives, nothing changed, he continued to work and drive.

After the initial shock we just carried on and took each day as it came. The only change we made was to take regular holidays and weekends away. He was 62 when he was diagnosed.

 

[Maria Helen]

Thanks everyone.
We are just so shocked as it was completely unexpected-no signs/symptoms and the scan was for something else.
Receiving this by post has been heart breaking as we have no idea if this is even a diagnosis or what it means for us.

 

[canary]

Just because someone has something that is consistent with a particular diagnosis, doesnt mean thats what they have got. In the absence of any actual symptoms, I doubt that the doctors will make an actual diagnosis of Alzheimers at this stage.

However, having said that, as @silkiest mentioned, you can get a lot of damage from dementia showing on a scan with very few symptoms, or, conversely, you can get profound problems with very little showing on a scan. I suspect that the doctors will consider this to be at the pre-dementia stage and that there is a quite high chance of your mum going on to develop symptoms of Alzheimers. When this will happen, though, will be impossible to say. The doctors might decide to prescribe something like Aricept (donepezil) to keep as much function for as long as possible.

In the meantime, now is the time to think about the future. Even if she never develops symptoms of dementia it is a good idea to think about what you/your mum would want. Get POA for both finances and health organised, then put them away until/if needed. Encourage her to make a will, if she hasnt already. It sounds morbid, but it can really help if you know what her views about end of life are. This link might help begin this conversation

Planning for end of life | Age UK

Thinking about the end of your life can be difficult, but giving it some thought now means you can consider all your options and start getting your affairs in order. Find out more with Age UK.

www.ageuk.org.uk

 

[Countryboy]

Hi all, I’m new here so need a bit of advice. My Mum is in her 70s-still working, driving, no obvious concerns with memory or personality change.
She had a MR head for a completely unrelated issue and we have received a letter to say it shows atrophy consistent with Alzheimer’s Disease.
I have no idea if this is a diagnosis, why this was sent to us by post instead of a discussion and what she should do next.
As a family, this has come completely out of the blue and we are totally shocked. Has anyone been in the situation where there are scan changes but no symptoms and does it always mean AD?

Hi Maria Helen Ok both you and you Mum are aware there is a slight problem but she hasn’t actually been diagnosed with Alzheimer’s / Dementia yet ?? you said Mum s still working and driving with No concerns about her memory well that brilliant she is being Positive

So my personal view would be carry on living her Life exactly as she is doing now, having a diagnoses wouldn’t make is go away but what a diagnoses would do is legally turn her life upside down completely she would be required by Law to inform DVLA and Car insurance that’s a nightmare is was to Drive probably need to inform employers and believe me it could lead to battles with bureaucrats.

I do know this I was diagnosed 22 years ago so fought several battles myself to carry on in employment and years with DVLA so my advice Think twice before you accept the diagnoses no turning back