Is diagnosis worth it?

[bakeja]

First post. I suspect I am going to need this forum a lot now that Mum appears to have AD. It has already been fantastically useful reading the various posts and people's generous replies.

I say "appears to have" because we don't have a diagnosis. Certainly the decline in my mother's mental state has been rapid and serious this year, going from mild forgetfulness to really unusual behaviour, delusions, fear of being alone etc

The question I have relates to something the doctor said. My sister accompanied my Mum when he first admitted she had a problem. Rather than refer her for tests / to a specialist, he just said that we needed to sit down and talk about it as a family. He seemed to be advising against further efforts at diagnosis saying that it would be stressful and would only "put a label on it".

Instinctively I feel that it would be worth persevering with trying to get specialist attention, a diagnosis and maybe treatment. Any thoughts on the benefits of pushing for an official diagnosis.

Thanks in advance for any views.

 

[1954]

Hi and welcome to TP

I would say it is worth having a diagnosis

If you have a diagnosis it will enable you to decided whether or not to have medication to slow the disease down. It will also give your mother the opportunity to get attendance allowance, possibly reduced council tax (if you are in uk) and various other sorts of help. We have also found it helps to know what is going on and others can understand MIL's behaviour better

There are I am sure many other reasons and I know since we had the diagnosis for my MIL it made us much more understanding and so did others

I would push for a referral to get a diagnosis if I was you

Take care x

 

[Grannie G]

Hello bakeja

When we took my mother to see a specialist, he diagnosed dementia but gave similar advice , that it would be too distressing to take it any further.

The specialists`s mother had had dementia and his judgement was on that basis. So dementia was diagnosed, but without scans or further tests.

Do you think this is what has happened with your mum and her specialist?

My mother was diagnosed 20 years ago and perhaps in those days it was not necessary to `put a label on it`.

There is a lot more knowledge today, about the different types of dementia and so it might be in your mother`s best interests to have tests to confirm the form of dementia she has, in order to access the best treatment possible and any beneficial medication.

A firm diagnosis will also entitle her to certain benefits, in particular, Attendance Allowance and a 25% reduction in council tax if she lives alone.

 

[Noorza]

For us the diagnosis hasn't made much of a difference in practical terms as Mum was already on Attendance Allowance, she can't have the full brain scan as she has a defib and pacemaker, she can't have any medication to help slow down the progress of this condition as she has heart and kidney problems.

BUT

having the diagnosis makes it easier for me to cope with the erratic and abusive behaviour as I can blame the dementia and not my mum. It is as if she is two different people and dementia mum hates me right now.

 

[60's child]

I also agree that you should push for a diagnosis. My Mum has been on medication that seems to have slowed things down a little. Mum was upset when she was told and I did wonder whether we had done the right thing. However, now she has pretty much forgotten that she has alzheimers, apart from the odd day when she seems a bit more aware. As others have said there are some financial benefits that could also be available to her.

Ps
Welcome to the forum

 

[Izzy]

Hi and welcome to TP.

I'm with the others here. If it's Alzheimer's your mum has then it's worth getting the diagnosis so that she can be offered medication which might slow down the progress of the disease. This is what happened with my husband and I believe the medication has given us more time to do things we wanted to do.

With my mum as she had TIAs and when she was in hospital for a severe UTI they did a scan and we were told it was vascular dementia. As she wouldn't get medication for this there were no further tests or visits to memory clinics.

I hope you visit the forum frequently. I know you will enjoy lots of support and friendship here. x

 

[PeggySmith]

A firm diagnosis will also entitle her to certain benefits, in particular, Attendance Allowance and a 25% reduction in council tax if she lives alone.​

Do the rules vary according to your LA? MIL already got a 25% reduction for living alone and, once she had a diagnosis, she stopped paying council tax altogether.

MIL has vascular dementia for which there's no treatment but the diagnosis certainly helped us as we could then tell officials about the diagnosis and stop them contacting MIL directly and asking her to remember stuff and make decisions which she could no longer manage to do.

Fortunately, the letter that arrived from the memory clinic started by saying that she didn't have alzheimer's. She was so pleased about that she just glossed over the vascular dementia and forgot all about it within 24 hours.

 

[rajahh]

I agree about the council tax. If a person with dementia lives alone then they pay no tax at all.

Mind you you have to fight for it sometimes.

I was refused twice, but in the end because we had a diagnosis our own gp filled in the form for us.

Jeannette

 

[zeeeb]

I am torn with this question. And with the "what ifs" if it ever happened to me. My mum got diagnosed after a year or more of mucking around at 57. Immediately she had her nursing licence revoked, her drivers licence restricted to 5km from home (i'm in Australia so different to UK). Immediately her work colleagues and employer of 30 odd years dumped her and stopped treating her with any empathy or respect (as a nurse, and an aged care worker, that was a fair kick in the guts).

Immediately when she went to donate blood they said she can't because she no longer has capacity to make those decisions because she answered a question "does someone manage your finances?" with the answer of yes, because dad does, and has for a long time before alzheimers was an issue. (she obviously does have capacity still and has donated blood for decades, so why would she need to prove that she's still allowed to donate blood with permission from her husband?)

It is quite horrible the way some people treat you when you have a diagnosis, the way they stop listening to you and trusting you. Heart breaking.

BUT, the aricept has really curbed alot of her symptoms (extreme anxiety and depression). It really has paused her alzheimers somewhat, so that is the plus. The anxiety in knowing what is wrong, rather than just knowing that something is very not right.

Apart from that, there have been few benefits of being diagnosed. Ridiculous amounts of doctors appointments and specialists appointments that it's become somewhat of a full time job managing her drugs and appointments etc.

If it were me, and I thought I had alzheimers, I'd avoid diagnosis unless life was unbearable, or unless there were very significant advances in medical treatment and effectiveness. I'd probably sneak off and jump off a cliff before things got too bad. I know that seems very pessimistic, but the choices get taken away from you, and the dignity gets taken away from you, and all of a sudden you become a burden, the last thing you ever want to be on your children and family and friends.

So, depending on how severe the alzheimers is, and how effective any treatments might be, it may or may not be worth it. What would be worthwhile, is to get in and make sure all the wills are done, and the power attorneys and medical directives are done, up to date and spot on. That stuff, makes the most difference later down the track once someone has to diagnose her as lacking capacity to make decisions.

If she is happy within herself and not anxious, depressed and worried, maybe it's not that necessary to get diagnosed.

 

[lin1]

Hello Bakeja Welcome from me

I am sorry to hear about your Mum

I am with the others here, IMO its not only worthwhile trying to get a diagnosis its important to try ,as for some types of dementia there are medications that may slow the progress
Also it may be easier to get the help.you will need

IMO the earlier medications such as Aricept or Ebixa
are started the better

As for the Doctor mentioning about Labels , well I am dumbfounded to say the least

 

[Bumble72]

Absolutely worth getting a diagnosis

Hi, getting my father diagnosed early this year after almost 2 years of visiting the memory clinic was the best thing we ever did.

The NHS is under such a strain these days that getting the right medication/help is a very slow process and as you will know, time isn't on our side. It's been a bit of a slog and very frustrating at times. To suggest getting a diagnosis is merely putting a 'label on it' isn't very helpful, we are led to believe our Doctors opinions and not question them, trust you instincts and get some help.

My father is finally receiving medication to help slow down the progress of Alzhiemers and he seems a little happier in himself, knowing what is wrong, rather than quietly worrying himself to death, he wasn't eating properly and kept thinking we were going to put him in a home.

We didn't want to hear the diagnosis as it confirmed our fears, but we are all so much calmer and understanding now.

First post. I suspect I am going to need this forum a lot now that Mum appears to have AD. It has already been fantastically useful reading the various posts and people's generous replies.

I say "appears to have" because we don't have a diagnosis. Certainly the decline in my mother's mental state has been rapid and serious this year, going from mild forgetfulness to really unusual behaviour, delusions, fear of being alone etc

The question I have relates to something the doctor said. My sister accompanied my Mum when he first admitted she had a problem. Rather than refer her for tests / to a specialist, he just said that we needed to sit down and talk about it as a family. He seemed to be advising against further efforts at diagnosis saying that it would be stressful and would only "put a label on it".

Instinctively I feel that it would be worth persevering with trying to get specialist attention, a diagnosis and maybe treatment. Any thoughts on the benefits of pushing for an official diagnosis.

Thanks in advance for any views.

 

[Noorza]

Hello Bakeja Welcome from me

I am sorry to hear about your Mum

I am with the others here, IMO its not only worthwhile trying to get a diagnosis its important to try ,as for some types of dementia there are medications that may slow the progress
Also it may be easier to get the help.you will need

IMO the earlier medications such as Aricept or Ebixa
are started the better

As for the Doctor mentioning about Labels , well I am dumbfounded to say the least

I'm not sadly, my son had extreme and severe OCD, the doctors told me not to label him, it was a phase that would pass. In a lot of cases you need the "label" to open the doors to get our loved ones help.

 

[kaykay80]

Imagine if you went to the doctor with a lump in your breast and they said its not worth getting a diagnosis.....just sit down as a family as discuss it....i feel that its neglectful of the doctor!!!

Not only does a diagnosis open the door for many other forms of possible medication and support, but it also allows an accurate picture of how many people in the UK are living with a form of dementia!

I would most definately push for a diagnosis

 

[bakeja]

Thanks

Thanks for taking the time to respond to my post. I am still thinking about it and have yet to talk to my sister but I think I will follow your advice.
James

Hi and welcome to TP

I would say it is worth having a diagnosis

If you have a diagnosis it will enable you to decided whether or not to have medication to slow the disease down. It will also give your mother the opportunity to get attendance allowance, possibly reduced council tax (if you are in uk) and various other sorts of help. We have also found it helps to know what is going on and others can understand MIL's behaviour better

There are I am sure many other reasons and I know since we had the diagnosis for my MIL it made us much more understanding and so did others

I would push for a referral to get a diagnosis if I was you

Take care x

 

[SallyPotter]

i can see both sides of the story, as Zeeb says however while your mother still has some mental capacity it would be a horrific thing to learn (bit of a sword of damocles moment), could you try and talk to her doctor independently and voice your concerns? I can understand medication etc but it would be horrific to learn that soon my mind was to wander and never come back (if I was in that situation).
If you try (as suggested above) to get LPA and everything you need sorted out for the future whilst maintaining normality for as long as possible.
When I found out about my parents they were already quite advanced and have now gone down the slippery slope quite rapidly, it may have made it easier to cope with financially and emotionally for me (LPA + all) but I'm glad they could keep up with their normal lives for as long as possible however hard the period following was.
Lots of love x

 

[Mielley]

I'm very sorry to hear about your Mum too. I have empathy with all that's been said here but I'm divided in my opinion. My Mum was diagnosed in April this year, on the one hand it's good to have a condition to get information about, good to get the medication started, good to be able to say 'its not your fault' when Mum's lost her bag for the umpteenth time, good that we can plan and sort out Power of Attorney, good to start discussing the future with family.

But on the day of diagnosis hope was lost. Forgetfulness was no longer something we made silly excuses for or laughed about, we're now dealing with a cruel medical condition. Family are incredibly supportive but none of us can stop Mum feeling despair, she talks and dreams about falling, the only way is down and we can't stop what's happening or take way her fear. I've also noticed that some people now judge and define Mum by her Alzheimers diagnosis, they don't see 'her' anymore. Yes her conversation can be limited, but she has memory loss that's all, she still has opinions and feelings and certainly has capacity. I know we can't prevent the inevitable and we need the knowledge that a diagnosis brings in order to prepare, but I think I would have liked a few more months of ignorance.

 

[jeannius]

First post. I suspect I am going to need this forum a lot now that Mum appears to have AD. It has already been fantastically useful reading the various posts and people's generous replies.

I say "appears to have" because we don't have a diagnosis. Certainly the decline in my mother's mental state has been rapid and serious this year, going from mild forgetfulness to really unusual behaviour, delusions, fear of being alone etc

The question I have relates to something the doctor said. My sister accompanied my Mum when he first admitted she had a problem. Rather than refer her for tests / to a specialist, he just said that we needed to sit down and talk about it as a family. He seemed to be advising against further efforts at diagnosis saying that it would be stressful and would only "put a label on it".

Instinctively I feel that it would be worth persevering with trying to get specialist attention, a diagnosis and maybe treatment. Any thoughts on the benefits of pushing for an official diagnosis.

Thanks in advance for any views.

I feel if you mum is still relatively young then maybe go ahead but the medical profession seem to ignore the much older clients as worthless. My mum is only supported by myself and for the time being a social worker. The mental health team only seem to use tick boxes when assessing. Never mind the problems my mother has generally day to day with memory, talking to herself, which for me is very unsettling and other problems, so you need all the help you can get.

 

[aalison]

positive outcome

My Mum has mixed vascular and Alzheimer's. The vascular has been physically very debilitating and the Alzheimer's has slowed her thinking down a lot, sometimes confusing her or making her imagine things.
The first big benefit of the diagnosis was that she no longer felt stupid about not being able to walk.
The was also an improvement with the higher dose of her medicine. After having lost the ability to write, she wrote "this is a good thing" on her next test.
I'm relieved that my brother (who cares for her) is being monitored for stress.
If she wasn't so physically disabled she would also get therapy sessions.
I think it helps that Mum is still intelligent (in a slow way) - so she can understand what's happening. Also she has always been broad minded and not judgmental of other people's mental capacities - so she hasn't become someone she would disapprove of.

 

[OMEARA]

Once you get official diagnosis you will be able to get assistance from social and medical services.

 

[inthemiddle]

Diagnosis for blind person

My mother, who is nearly 88, has little sight left due to macular degeneration. The memory test given by her GP could not be completed because she could not do the drawing and writing elements. Is there any point going down the memory clinic route? Do they have any better means of assessment?

Her memory is getting very bad and she has brief spells of total confusion. I'm sure she forgets to eat as she has lost a lot of weight over the past few months and there is no apparent medical reason for that.

Am at a loss to know what to do - I have power of attorney but she is very resistant to going to the GP again. What would getting a diagnosis achieve? She gets full attendance allowance because of the blindness anyway