Why bother with a diagnosis?

[Imstressedout]

Dad (83),who is quite far down the dementia path, has now settled into a nursing home.

In between the struggle to make sense of their finances and benefits (nightmare) we’ve noticed signs that mum may too be heading that way.

However a year after dad was diagnosed mum confided that they wish they hadn’t bothered as he went downhill rapidly once he knew. It took months to get any drugs and they didn’t seem to make any difference.

With this in mind I think it unlikely mum will willingly undertake any tests, preferring to ignore it instead (something she has much previous for).

From what I’ve see then, I can’t think of any reason to explore a diagnosis as she’s unlikely to want any help offered as she’s stubbornly independent.

What would you do?

 

[Grannie G]

I can’t think of any reason to explore a diagnosis as she’s unlikely to want any help offered as she’s stubbornly independent.

Your mum may be stubbornly independent now @Imstressedout but she is unlikely to stay this way if she does have dementia as it progresses.

I would just seek advice in confidence from your mum`s GP just to allow them to be aware of the situation.

If your mum thinks your dad went downhill after his diagnosis. she may be right. We didn`t tell my husband about his diagnosis. He thought he was being seen for depression and memory problems.

 

[marionq]

By the time you seek a diagnosis the illness is usually already progressing so it is not surprising that it appears to be going downhill. At an early stage I could talk to my husband, go for long walks, go on weekend trips with him etc. Now seven years down the line his memory is about a few seconds and he can only walk for five minutes and I wouldn't even attempt a day trip with him.

That is the progression of Alzheimers.

 

[Louise7]

The fact that medication didn't seem to make any difference to your Dad doesn't mean that the same would apply to your Mum as people's reactions to medication differ. There are some positives to obtaining a diagnosis, not least it is helpful in obtaining various benefits which could be helpful for your Mum.

 

[Sirena]

If she needs to go into a care home I'd think they would want a diagnosis, so it would be helpful for that reason if no other. Having said that, my mother's care agency and CH never actually asked to see the diagnostic paperwork, they just took my word for it.

It depends how much aggravation is involved in getting your mother to agree to attending the memory clinic and have an MRI. Given she saw the procedures your dad went through she will probably know why these tests are happening and she may just refuse in which case you don't have the option. My gran had dementia but was never formally diagnosed because she refused to see the doctor. She self-funded care in her own home, so it didn't really matter.

 

[Grannie G]

Hello @Imstressedout

Perhaps this might help you decided.

why-need-diagnosis

 

[YorkshireLass]

Dad (83),who is quite far down the dementia path, has now settled into a nursing home.

In between the struggle to make sense of their finances and benefits (nightmare) we’ve noticed signs that mum may too be heading that way.

However a year after dad was diagnosed mum confided that they wish they hadn’t bothered as he went downhill rapidly once he knew. It took months to get any drugs and they didn’t seem to make any difference.

With this in mind I think it unlikely mum will willingly undertake any tests, preferring to ignore it instead (something she has much previous for).

From what I’ve see then, I can’t think of any reason to explore a diagnosis as she’s unlikely to want any help offered as she’s stubbornly independent.

What would you do?

My experience with my mum was - a visit to the GP which resulted in blood tests to rule out other causes, a referral to the memory clinic followed by a head CT scan, a follow up appointment with the consultant with the statement "there is no doubt it's Alzheimer's Disease we'll see you in three months to see how you are going on" and a scrap of paper given as we left the room with the Alzheimer's Society phone number written on! That was in March and weren't contacted again until the end of the year. That's another story of angst but eventually it was explained to me that after diagnosis you are back to the care of the GP! It would have been helpful if this had been explained in the first place! A diagnosis has offered little from a system that my mum has paid into all her life and is now suffering from a terminal brain disease. Crazy and depressing times I'm afraid.

 

[Susan11]

As my Mum is 94 and visiting the hospital for a scan would have been very distressing for the her the Dr agreed that it wasn't necessary and made the final diagnosis himself without the scan.

 

[canary]

My OH does not have a diagnosis (despite all efforts).
He is now at the stage that a day care place would be beneficial to both him and me, but I have discovered that many places will not accept you without a diagnosis.