Should I tell my Dad he has 'dementia'?

[Pingu]

Hi, my first post here.
My Dad has not been diagnosed with anything, and lives at home with my Mum. I moved back in with them last year (doesn't matter why, for some peace and quiet etc) but this will be temporary. Dad is late 70's, Mum is early 70's.

Dad has been going 'downhill' for 3-4 years now, initially it was a short term memory issue (he'd forget a conversation 20 minutes after having it etc), later it became a general cognitive issue (difficulty solving simple problems etc), he also does stuff like puts salad in his soup or wears gumboots into his bedroom. Lately he's become fearful, he sees problems where none exist and panics over them and it's difficult to persuade him that there's nothing to worry about.

So far we (my Mum, me, and my brother who lives nearby) deal with issues at face value as they present themselves, i.e, fix Dad's attempt at 'fixing' something, or repeatedly tell him that the thing he's worrying about doesn't exist. [An example: It's early spring over here, and the firewood shed is getting low although there's enough to last the season. Dad goes into the woodshed every day to bring in some wood for the stove and is the one who burns it. But, this morning he told me the firewood has disappeared. I told him it's gone up the chimney. He insists it's been removed, or been stolen and it's difficult to persuade him otherwise.]

So this brings me to my question. Is there ever any advantage telling someone with dementia (whether that's the correct term for my Dad or not, I'm not sure, either way it's a very significant age-induced reduction in cognition) that that is the real issue? What I'd really like to do is tell my Dad something like this...
"No dad, the firewood has not disappeared, it's been burned this winter by you, and your memory of what should be in the woodshed probably relates to the way it was 5 months ago in autumn. That's because you're nearly 80 and your memory has become very poor, it's a common thing to happen to people as they age. It's sad, but there's nothing you or anyone else can do about it and it's not your fault at all. So in future you should take other people's word for it when they disagree with you on a fact, they'll very likely be right and you'll very likely be wrong."
...or something like that, but I don't know if it's a good idea.

Some other points:-
a) My Dad has pride issues, he believes his Celtic genes are better/stronger than most and will have great difficulty believing that his brain could be degenerating, as it's not what's supposed to happen, it's what happens to other people, not him.
b) My Dad believes health issues are to a very large extent a result of lifestyle choices (he's very wrong, they're mostly genetic and/or random). Hence he would think dementia was his own fault.

Dementia for my Dad is incompatible with both those beliefs, this is in spite of the fact that my Dad's dad had dementia and had forgotten who my Dad was by the age of 78 (Dad went to visit his father overseas at that time and got the "Who are you?" treatment).

My Mum believes that Dad would find if extremely upsetting to be told that he's losing his marbles. It's not something that he would have considered even a remote possibility.

My Mum is coping at the moment, the dramas don't happen all the time, but it is getting worse and we all know it's going to keep getting worse.

So, should we tell him his mind is degenerating? Will that 'help' in any way? Or are we better off continuing to deal with issues at face value one at a time?

 

[Katrine]

Hi Pingu, welcome to TP. How eloquently you describe your dilemma. I can just picture your dad looking at his empty woodshed and stumping back in to complain. I was particularly struck by how you describe your father's belief system and how this would not be compatible with accepting that he has any form of age-related memory loss.

I can't say whether he would totally resist a diagnosis. Some people with dementia, particularly younger people, seem to be relieved by finding out what is wrong so that they can adapt and live life to the full while they are still able to. I don't think this happens so much with older people.

If your dad's expected 'life plan' has been on track so far, he will expect it to carry on the same way, as if it was just a matter of choice and habit. I don't think most people expect a sudden downturn in health, despite the evidence that it is actually fairly likely. If he's had good physical health all his life he will see this as the result of his healthy lifestyle. The faulty logic involved is that he will think that if he maintains his healthy lifestyle he will continue to enjoy good health.

I say this because that was part of my mother-in-law's fixed view of how things ought to be. Her set of beliefs went like this:

• I am a health professional and when I was working I looked after other people. It therefore isn't right that I should need professional help. That's for other people.
• I know all about healthy lifestyle and I've always taken plenty of exercise and eaten sensibly. I don't understand why I am having problems. What have I done wrong?
• I have a dodgy heart. THAT is my health problem. I have always known that my dodgy heart will be the thing that gives me problems in old age, not anything else.
• I do crosswords and Sudoko, I read widely and have an excellent vocabulary. I exercise my brain in order to maintain my mental agility and good memory. If I keep doing this I will maintain good brain health.
• It's just old age. Everyone's memory gets worse when they get older. When I tell people my memory is getting worse they all say they are exactly the same, so it's not just me that has this problem. It's just old age.
• I need to make more lists. If I write down what I'm supposed to be doing each day I'll stay in control. It's just a matter of writing everything down to remind me.

MIL's passionate desire to remain independent, coupled with her intelligence, and her ability to use a number of coping strategies, enabled her to live alone for far longer than her family or her health professionals expected. In the end, as her dementia worsened, the coping strategies broke down. Some 'helpful' things that we introduced at a later stage were accepted for a short period, and many did not work at all, mainly because she lost the ability to retain any new information and skills.

I can only imagine how hard it is for your dad, as a man and 'head of the family', to contemplate loss of faculties and by implication loss of control. My father did not have dementia but he had a very bad heart and a crumbling spine. He absolutely hated illness and tried to ignore it as much as possible. He had always been fit and healthy and was a keen sportsman. He found it extremely depressing that his body was letting him down.

I don't think you can just go on pretending that nothing is the matter, but equally I don't think your dad will want to admit to having memory problems. In the short term, you might get round issues like the 'stolen firewood' by giving him subtle prompts so that he can work it out for himself. For example:

Dad: The wood has gone from the woodshed! Someone must have stolen it!
You: We got through quite a lot over the winter, I expect there isn't much left now.
Dad: It was full yesterday, someone must have got in and taken it.
You: I expect it is time to order some more. We will still need some over the spring months.
Dad: I'm not going to order more, we should have plenty in there. I ought to know, I go there every day.
You: You're right, we probably have enough to see us over the spring. However, we could go to the wood yard tomorrow and check. They might have an explanation.

That particular conversation might not work at all, depending on his mood. He might be pacified by the thought of talking to the men at the wood yard rather than being told what to do by his family. I think it is a matter of finding some 'scripts' to use that fit with his belief systems. As you have indicated, anything that doesn't fit will be rejected. You have my utmost sympathy.

Your post began with the comment that your dad is going downhill fast. It would seem therefore that you will need to engage with health professionals soon. Does your dad acknowledge any memory issues at all? If he does, whatever his explanation for it, you might be able to suggest that the doctor gives him a check-up for e.g. blood tests, vitamin shots, hearing test, or whatever you think he might accept as a possible means of fixing the problem.

 

[Izzy]

Good morning and welcome to TP.

I'm sorry your dad is facing these problems. I think the difficulty will be that your dad will forget what you tell him and you will have to keep repeating what you've said.

I wondered too if he would agree to some tests. Depending on diagnosis there may be some medication available to him which could slow down the progression.

Perhaps you might find this thread helpful in the meantime-

http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

 

[Jessbow]

it is terrimly hard.

Don't try and agrgue/vorrect or reason that will frustrate him

Try and return the ball off at an angle-
he says the wood has gone...'Do you want me to re-order or will you do it?''

My mum often says the loo is broken, she just forgets to flush it and when its dirty on her return its because she .....Flushed it and its not working properly''

I say I'll ring the plummer, get it fixed. No point in telling her she just forgets when I know perfevtly well that's the problem. I just try and ''pop to the loo'' before she does do its clean

 

[Austinsmum]

Hi Pingu,

sorry you had to the need to find TP but it’s a good job you did. Some great sage’s on this sight (not me - too opinionated!)
Anyway, we managed to get my mum diagnosed with AD without her being aware by liaising with the Doctor’s behind her back and her just going in for regular blood tests and such. She would be horrified if she could find Alzheimer’s in the dictionary. The point is, without a diagnosis your dad won’t be eligible for Carer’s allowance, attendance allowance, council tax reduction etc. So financially it’s definitely worth it if you can do it behind is back so to speak.
Good luck. X

 

[Noorza]

http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

This thread is really information about how to communicate with a person who has dementia. There is no point in correcting their "new realities" as they believe them to be true and they'll think you are wrong. Nothing will budge them.

Mum believes her shed was burgled and they took half a set of snooker balls. It happened no amount of "they'd have taken the expensive stuff too mum you haven't been burgled" will make the blindest bit of difference. It's a case of "that's terrible Mum good job they only took the balls, we can easily get more for the grandchildren, (and distract) Do you fancy a cuppa.


So you acknowledge and distract, correcting them will only make them frustrated as they can't understand that what they're thinking isn't true.

Welcome to the forum btw.

 

[Nick99]

I agree with Noorza, you cannot persuade a person with dementia that they are mistaken. They can rationalize anything and its no use telling them they are wrong and others are right - this leads to frustration and anger. If he believes the wood has been stolen then to him that is a fact - it is a logical assumption on his part because he does not remember burning it. People with dementia often use logic to explain something and if they cannot find something then it has been taken deliberately. Often this logic process leads to some bizarre conclusions but they do not see this.
You need a proper diagnosis to help with the financial and practical issues, but I think there is little point in going into detail with him. My FIL knows he has memory problems but puts it all down to getting old and there is little point in disagreeing. While he is still lucid its worthwhile sorting out some practicalities, i.e. do they have a joint bank account, can your mum get her hands on the savings, etc.
You will soon be on the road to distraction techniques and little while lies, its where we all end up. Welcome to TP..

 

[Katrine]

"You will soon be on the road to distraction techniques and little white lies, it's where we all end up."

Oh Yes, Nick, how true. The sooner we wake up to this being the kindest and most compassionate approach, the less pain all round. As I keep saying to SIL, there are no 'facts', there is no absolute truth, when you are in MIL's reality. You have to kick the ball back into play from where she has left it - it's no good saying "I'm way over here, bring it over here!" You cannot drag a person with dementia back to your 'reality' - you have to meet them in theirs.

 

[ashleypollock]

This is a hard thing to tell someone but I think you should tell him. My greatgrandfather had it and earned his angel wings on August tenth 2013 and my grandma now has Alzheimer's and my grandpa doesn't want to tell her because she will get upset but I think he should tell her because if you don't chances are that he will probably start questions you like what's wrong with me and my grandma does that so yes I think you should tell him


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Ashley

 

[Sandra8]

I haven't read all the posts but my mum was diagnosed 6 and half years ago. She was told, without my permission, that she had Alzheimer's. she was devastated but the next day she had forgotten and thought she had Parkinson's. my point is that elderly people are terrified of this illness so why put them through that spell of terror when they will have forgotten. I banned the A word and she has now been living with me for 5 and half years

 

[Noorza]

This is a hard thing to tell someone but I think you should tell him. My greatgrandfather had it and earned his angel wings on August tenth 2013 and my grandma now has Alzheimer's and my grandpa doesn't want to tell her because she will get upset but I think he should tell her because if you don't chances are that he will probably start questions you like what's wrong with me and my grandma does that so yes I think you should tell him


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Ashley

With respect your grandpa knows her best and there are many other explanations that the person with dementia will accept without causing them pain.

With mum the dementia has caused many falls, she accepts she has banged her head that has lost her memory, she fears dementia.

She accepts her heart lets her brain down due to lack of oxygen, she gets deeply distressed that it may be dementia.

She has small vessel damage in her brain which she knows affects her memory, she is happy to accept that, she fears dementia.

She is happy to accept all of what she is experiencing the hallucinations, confusion etc. so long as noone uses the dementia word.

Keeping them happy is more important than giving them technical or factual explanations which can hurt them deeply. They can't fully understand it anyway and when they do it hurts as many who don't want to accept it.

I do hope this helps to give an alternative perspective. Telling can be more harmful than it can be beneficial. If your nan asks questions she may well forget the answers later as short term memory loss is a common factor then she'll have to be told again.

Contact a local alzheimer's society group to get some support they are brilliant.

 

[Vesnina]

With everything else taking into account, the point Izzy stressed is very important:
there are ways to help with medications,
and the sooner someone starts,
the better.

 

[Noorza]

With everything else taking into account, the point Izzy stressed is very important:
there are ways to help with medications,
and the sooner someone starts,
the better.

It's a very valid point but it's not the case for everyone. Sadly Mum can't be treated due to heart and kidney problems. IF a person feels it is right not to tell their partner/parent with dementia then the diagnosis and medication can be done without telling the person it's for dementia.

Mum wouldn't go to the Memory Clinic as she "knew" it was for "mad people" her words not mine. So the Memory doctor came to us and said they were memory doctors rather than psychiatrists and were here to help her with her memory loss. That was fine, a visit to the clinic was never going to happen.

It's a very individual decision, my family have left it to the doctors and myself to decide whether to tell her as I've been closest to Mum all of my adult life and have done all of her care. It's me who has had all of the difficult conversations.

It's an incredibly difficult decision to make, to call it agonising is an understatement because more than anything it is so individual and it depends on how the person receiving the information would react and cope with that information. For many they would want to know, for others like my mum they may want more than anything to hang on to their alternative explanations for their confusion, memory loss etc.

She is in hospital now and I've explained the situation to the staff who have it on record. I spoke to the doctor last night and she said the most important thing is that mum will tell them what she is feeling, what's she's forgetting, that she feels (because she has created physical reasons for her symptoms rather than it being dementia) able to be honest with them. They are very tactful with her.

Good luck to anyone facing this, it really is one of the hardest decisions.

 

[Witzend]

Personally I think so much depends on the individual and how far their dementia has advanced. If short term memory is already very poor then they are almost certainly going to forget whatever you say anyway. And often people can't accept the diagnosis, because they simply can't remember that they can't do this or that any more. So very often they are never going to understand and it may well upset them or make them angry if you try.

Of course if someone is in the very early stages and is anxious to do whatever will help, that is a different matter, though of course such a diagnosis will always be very upsetting.

FWIW, my mother did apparently accept her diagnosis from the GP, but had completely forgotten by the time she got home maybe 15 minutes later, and if we tried to remind her she just got very upset and refused to believe it. She would not have argued with the GP, he being aka God.

With my FIL who had VasD we never bothered trying to tell him at all, since he would never have accepted it,would have forgotten in 2seconds anyway,and was prone to furious rages if crossed in any way.

 

[Pingu]

Many thanks to all who've replied here. I've read this thread 3 times now and am still absorbing some of the points made. Incidentally some of the coping techniques I'd already arrived at, e.g., instead of having a confrontation about something Dad did wrong, it's best to ignore it and go fix it when he's not looking. Also, I have noticed that when there's an argument or debate about something, then Dad is unlikely to remember details or facts about it, but he will remember the 'attitude' or emotional state of people involved; a good reason to not start shouting or let frustration show.

I'm going to try the "acknowledge, deflect, distract" option rather than attempting to confront irrationality with logic and reason in the cases when logic and reason doesn't appear to be working.

That "Compassionate Communication with the Memory Impaired " thread looks interesting, I'll be reading that one a few more times. Some of the points made there I did not find intuitive, but I can see how they could be valid and effective.

It seems that there's a good case for not mentioning to my Dad that we believe he has dementia. That's a relief actually, and my Mum will also be relieved to not need to have that conversation.

By the way, in reference to the comments made on medication by a couple of responders... We looked into that 1-2 years ago (I read plenty on it, and my Mum talked to her GP - same GP that my Dad uses), and the conclusion was that at best, with a diagnosis of AD (my Dad has not had any diagnosis), then some patients have an improvement in some symptoms some of the time with medication, and the medication does nothing to arrest the progression of the disease. Dad's GP surreptitiously did some tests (I don't know what they were) but the conclusion was that no medication had any purpose for him at this stage.

I found this page to be a good summary of the condition although I'm sure you've all read it (sorry, I can't post links, my post count isn't high enough, you'll have to add another 'w'):
ww.patient.co.uk/health/memory-loss-and-dementia

Incidentally this article from last year on Alzheimer's research
ww.independent.co.uk/life-style/health-and-families/health-news/drug-giants-give-up-on-alzheimers-cure-8153606.html
does not augur well for the future.