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Stupid question, but what are the benefits of a formal diagnosis?

Graybiker

Registered User
Oct 3, 2017
223
County Durham
I should know this as mam had Alzheimer’s for 10 years, diagnosed.
Dad has been showing signs for 12 months or more but seems to be deteriorating much more rapidly. I’m sure covid isolation hasn’t helped, along with mam’s death almost a year ago & of course he is now living alone.

He is well aware he has no short term memory & I think also aware he is getting worse.

My problem is, I don’t think he will agree to any tests or a diagnosis. He never wanted to learn anything about Alzheimer’s with mam, said “I know as much as I need to”.
It’s now at the point where I’m getting concerned for his safety. He’s been stuck in the house for months, yet this afternoon he told me he’d got the bus to the main street & gone to the barbers for a haircut. He also went to the cobblers to pick up a watch, that isn’t there. He then went to 2 shops to buy a bottle of whiskey, neither of which sell alcohol, Boyes & Wilko!

He (obviously) didn’t remember that I’d told him the day before not to get the bus anywhere, I would take him in the car.

Back to my question, would there be any advantage right now if dad had a diagnosis? Bearing in mind when I arranged carers to administer meds to mam, he stopped it. That reminds me, confused re his meds too, only 2 of them, very healthy 87 yr old otherwise,
 

Bay21

Registered User
Jul 31, 2013
36
I guess one of the benefits could be medication? When my Dad was diagnosed he was put straight on to memantine by the memory clinic.

Financially there could be some benefit too. If he is reasonably fit other than his memory then I assume a diagnosis would help with things like attendance allowance should he need it, which in turn will help with Council Tax.

Just a couple of things that spring to mind but I'm sure there others a bit more experienced than myself that might have some other suggestions.
 

Graybiker

Registered User
Oct 3, 2017
223
County Durham
I guess one of the benefits could be medication? When my Dad was diagnosed he was put straight on to memantine by the memory clinic.

Financially there could be some benefit too. If he is reasonably fit other than his memory then I assume a diagnosis would help with things like attendance allowance should he need it, which in turn will help with Council Tax.

Just a couple of things that spring to mind but I'm sure there others a bit more experienced than myself that might have some other suggestions.
Thanks for replying.
Mam was put on memantine, it was v bad for her. They tried other meds but we couldn’t see any significant difference, although, like I said,her decline was much slower so maybe it helped, no way to know.
Financially might actually be the way to go with him. He is very concerned about leaving as much as he can to me & my sibling, ( who lives abroad).
Thanks for that, appreciate it
X
 

Jan L

Registered User
Mar 26, 2020
51
I agree with @Bay21 he may qualify for Attendance Allowance (2 different levels) and a reductions in Council Tax, although if he is living on his own he may he may already quality for Single Person Allowance on the Council Tax. He will get put on medication, which will be reviewed every 12 months. My Husband was diagnosed with the combined Alzheimer's/Vascular Dementia, moderate/severe over 5 years ago (he had suffered with it for years but wouldn't go to the Doctors). At our last medicine review with the Doctor in February, I asked for help and advice on the problems I was having with him to be told that it was his job to prescribe medication, which we had done and there was nothing else the NHS could do. I have been his sole Carer and support the last 18 years during the struggles in the early stages, which included the loss of his job, so I was the main wage earner also dealing with his Mother's Dementia, moving her into a Care Home, clearing and selling her house and death at 92. I struggled through the Winter, always a difficult time for those with Dementia, he wouldn't go out because it was raining, cold, dark etc, then just when things were picking up we went into lock down, this has been the final straw with no social interaction for him and he has deteriorated a lot, we now can't get out at all because he won't get out of bed, some days he won't let me shower and dress him. This week he has pushed me away when I have tried to get him upstairs to bed. I am getting to my wits end and do not know where to turn.
 

silkiest

Registered User
Feb 9, 2017
153
Hi @Graybiker, you can only get support from the Admiral Nurse after a formal diagnosis has been made, these specialist nurses can be a great support when trying to cope with new symptoms and when you dont know where to get help . Our local council has a "dementia hub" where all the local dementia services can be accessed - again not available if there is no formal diagnosis. Attendance allowance and therefore carers allowance does not need a formal diagnosis, but it helps. Look at the attendance allowance forms online - they are symptom based - age concern will help you fill them in if the document seems too much to deal with. You can get zero council tax assessment with a formal diagnosis and attendance allowance in our council area - I think the rules vary a little with different local authorities.
I hope you have power of attorney in place for your dad, if not, if he can still make decisions you can get the forms from gov.co.uk and complete them yourselves. If not a formal diagnosis may help in the future if you need to go to court to act on his behalf.
 

Graybiker

Registered User
Oct 3, 2017
223
County Durham
Hi @Graybiker, you can only get support from the Admiral Nurse after a formal diagnosis has been made, these specialist nurses can be a great support when trying to cope with new symptoms and when you dont know where to get help . Our local council has a "dementia hub" where all the local dementia services can be accessed - again not available if there is no formal diagnosis. Attendance allowance and therefore carers allowance does not need a formal diagnosis, but it helps. Look at the attendance allowance forms online - they are symptom based - age concern will help you fill them in if the document seems too much to deal with. You can get zero council tax assessment with a formal diagnosis and attendance allowance in our council area - I think the rules vary a little with different local authorities.
I hope you have power of attorney in place for your dad, if not, if he can still make decisions you can get the forms from gov.co.uk and complete them yourselves. If not a formal diagnosis may help in the future if you need to go to court to act on his behalf.
Thanks, appreciate the reply, lots of info.
It’s going to take time I think but good to know what’s available. Had no contact with Admiral nurses previously so will have to look into that. I think dad got attendance allowance for mam & age concern came & filled them in. No POA but we now have a joint account so I can access his funds for shopping etc. He has another account, am planning on bringing that one up soon.
Again, many thanks & hope all is well
X
 

silkiest

Registered User
Feb 9, 2017
153
Hi @Graybiker There is also POA for health which can be very useful. GP's, Nurses, other health carers will often not talk to you without it. I've lost count of the number of times i've had to talk to medical personnel re my parents health. Attendance allowance is for the person needing the help, so you would have to apply for your dad on his behalf. As his carer if you are spending more that 35 hr weekly and are on a low income you can apply for carers allowance for yourself once he gets attendance allowance.
 

Graybiker

Registered User
Oct 3, 2017
223
County Durham
Hi @Graybiker There is also POA for health which can be very useful. GP's, Nurses, other health carers will often not talk to you without it. I've lost count of the number of times i've had to talk to medical personnel re my parents health. Attendance allowance is for the person needing the help, so you would have to apply for your dad on his behalf. As his carer if you are spending more that 35 hr weekly and are on a low income you can apply for carers allowance for yourself once he gets attendance allowance.
Thanks. We had no POA re health for mam but didn’t find it a hindrance until the end. Doctors, hospital & care home had no problem with that. When she was admitted to hospital it seemed like her wishes were disregarded anyway. I’m not saying it was the wrong decision, but her written desire to do everything possible was overruled.

Re Attendance Allowance, that may be v helpful. I am also ‘unofficial ‘ full time carer for my adult daughter but not in receipt of any benefits for that. She receives higher ESA & PIP. I myself live on an Ill Health Retirement Pension from my former employer, so definitely on a low income. Besides looking after my daughter I do all dad’s shopping, arrange prescriptions, take him to all appointments, check on him in person at least once a day, ring him 2 or 3 times a day. I’m not sure if that would meet the criteria but will look into it.
Thanks again
X
 

Graybiker

Registered User
Oct 3, 2017
223
County Durham
I agree with @Bay21 he may qualify for Attendance Allowance (2 different levels) and a reductions in Council Tax, although if he is living on his own he may he may already quality for Single Person Allowance on the Council Tax. He will get put on medication, which will be reviewed every 12 months. My Husband was diagnosed with the combined Alzheimer's/Vascular Dementia, moderate/severe over 5 years ago (he had suffered with it for years but wouldn't go to the Doctors). At our last medicine review with the Doctor in February, I asked for help and advice on the problems I was having with him to be told that it was his job to prescribe medication, which we had done and there was nothing else the NHS could do. I have been his sole Carer and support the last 18 years during the struggles in the early stages, which included the loss of his job, so I was the main wage earner also dealing with his Mother's Dementia, moving her into a Care Home, clearing and selling her house and death at 92. I struggled through the Winter, always a difficult time for those with Dementia, he wouldn't go out because it was raining, cold, dark etc, then just when things were picking up we went into lock down, this has been the final straw with no social interaction for him and he has deteriorated a lot, we now can't get out at all because he won't get out of bed, some days he won't let me shower and dress him. This week he has pushed me away when I have tried to get him upstairs to bed. I am getting to my wits end and do not know where to turn.
I’m so sorry, you’re obviously having a really hard time & have been for too long. Thank you for replying & I sincerely hope things get easier for you
X
 

Tigger68

Registered User
Jul 14, 2019
14
Just to add to these, generally it’s about recognition, in these that a formal diagnoses is like a gateway to services and support for him and you. But a formal diagnoses is at the end of the day ‘just’ a label ...it doesn’t ,materially change anything in that regard.
There is also something aboutHOW w diagnosis is given, and unless it is done with great sensitivity and care then it can be counterproductive and causes a lot of distress to the person diagnosed and all around them.
 

CWR

Registered User
Mar 17, 2019
203
It's also important for allowing you access to a social worker, basically it opens doors for you. Again, when they come to check your father,make sure you are there too. When they came to visit my aunt, she gave all the right answers so they thought she was fine, whereas if I had been there I could have said: No she doesnt! In my mother's case, possibly because of her age, there were no tests to ascertain what kind of dementia she had, so even without that I was able to access services, Good luck!
 

Jan L

Registered User
Mar 26, 2020
51
Just to add to these, generally it’s about recognition, in these that a formal diagnoses is like a gateway to services and support for him and you. But a formal diagnoses is at the end of the day ‘just’ a label ...it doesn’t ,materially change anything in that regard.
There is also something aboutHOW w diagnosis is given, and unless it is done with great sensitivity and care then it can be counterproductive and causes a lot of distress to the person diagnosed and all around them.
I agree with your comment about it being counter productive, my Husband spent years denying he had a problem (over 10 years) and tried to pretend there was nothing wrong. Once I got him to the Doctors and ultimately the Specialist ( 5 1/2 years ago) he got the diagnosis, he stopped trying and hasn't done anything since. He sat telling the Specialist he could cook a roast dinner, which he hadn't done on his own for a couple of years, but would help with the preparation of some veg and stir the gravy under my guidance, but he hasn't so much as made a cup of coffee or even got a glass of water for himself or me since.
 

Graybiker

Registered User
Oct 3, 2017
223
County Durham
Thank you all for your replies, lots to think about.

I think the biggest problem is that dad is scared. Understandably so as he lived with mam’s deterioration & knows all too well what lies ahead. I would be scared if it was me. Up to now we’ve (me & my daughter) been keeping a close eye on him & reassuring him that he’s doing ok. Obviously lockdown has changed this.

Oh & just found out that when he went on his jaunt he didn’t wear a mask, he forgot, so now even more worried. 2 bus journeys, a haircut & 2 shops all with no mask 🤷🏻‍♀️ & no-one questioned it.
We’ve been so careful so as not to pass virus to him & now we’re worried about him passing it to us :( my daughter is scared to go near him. . It’s the 1st anniversary of mam’s death in 6 days & we had hoped to go to the crem, the 3 of us. It’s minimum 20mminute drive each way, not sure it will happen now.

Anyway,practicalities. Dad is finding it hard to keep on top of cleaning, things like bathroom & kitchen. Would a diagnosis help with access to that kind of thing or is it down to me to sort it?

Again, thank you
X
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,716
66
Toronto, Canada
@Graybiker just because medication did not help your mother does not mean it wouldn't help your father. If you ever get a diagnosis for which medication can be prescribed, if I were you I would at least give it a try.
 

canary

Registered User
Feb 25, 2014
13,663
South coast
Quite often you have to use subtefuge and "love lies" to get them there. Persuasion and reasoning doesnt usually work as they cannot "join up the dots" anymore to be able to follow the reasoning.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,716
66
Toronto, Canada
My mother insisted there was nothing wrong with her. I said the tests would prove it. That wasn't a lie, as if there were nothing wrong, it would have proved so.
 

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