My dad may have early onset dementia: what should I do?

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Anonymous #1
#1
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#1
OK, so I am a known health professional on TSR (id care if you not speculate or if you do, spoiler it and ill PM you if you are correct) who wishes to remain anonymous as people i know IRL scour TSR.

anyways, I have for a while suspected my dad has been developing early onset dementia since 2014, however I kept getting riddiculed by people saying im an idiot (said people no longer do so due to a) whats happening with my dad and be what has happened to others and the intervientions I have taken to aid their care despite my hospital being absolutely useless and so far behing on their guidelines).

Last year however he was made redundant and since then his signs / symptoms have worsened. He is forgetting things a lot, he is having mood swings, he has become absolutely lazy and he isnt looking after himself (one could argue there is signs of depression but tbh Id rule that out). In fact recently he asked why they have stopped showing my name is earl...despite him knowing it was cancelled a few years ago and he keeps thinking certain sportspeople are still playing for teams they left 3-5 years ago.

Id love to refer him to my GP but my GP recently got sacked (new management takeover etc etc) and the locums who have been there are either too full of themselves and idiotic when it comes to decision making and prescribing or the decent ones are only there on a saturday for 4 hours and is usually fully booked.

what should I do? Also he has a permanent (as they are) degenerative condition which has similarities to chronic fatigue syndrome but also constant atrophy and weakness and he has a GI condition.

furthermore he is absollutely terrified of hospitals due to traumatic experiences in childhood and he is terrified of being institutionalised (which he wont, chances are it will be an AChEi or an antidepressant prescribed but am worried of potential interactions with other drugs and his conditions)

So yh, what should I do?
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Tiger Rag
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#2
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#2
Have you raised your concerns with your mum?
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Anonymous #1
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(Original post by Tiger Rag)
Have you raised your concerns with your mum?
She noticed these symptoms around september last year as well. I have no siblings but a lot of family and firends have noticed his changes as well. she agrees something needs to be done (i know what needs to but question is I am restricted professionally from doing so even though I know what needs to be done and would do it in a heartbeat if I can)
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Anonymous #1
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I should also add he is afraid of not being allowed to drive but I have encountered a lot of patients who have alzheimers and vascular and they still drive around (and they are much older than my dad)
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Anonymous #1
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because he is dsiabled already, his car is his only means of transport. But the irony is that he has become socially withdrawn as well
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JMR2021_
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I would definitely take him to a GP, emotionally raise your concerns with him/her!
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Reality Check
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#7
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(Original post by Anonymous)
OK, so I am a known health professional on TSR (id care if you not speculate or if you do, spoiler it and ill PM you if you are correct) who wishes to remain anonymous as people i know IRL scour TSR.

anyways, I have for a while suspected my dad has been developing early onset dementia since 2014, however I kept getting riddiculed by people saying im an idiot (said people no longer do so due to a) whats happening with my dad and be what has happened to others and the intervientions I have taken to aid their care despite my hospital being absolutely useless and so far behing on their guidelines).

Last year however he was made redundant and since then his signs / symptoms have worsened. He is forgetting things a lot, he is having mood swings, he has become absolutely lazy and he isnt looking after himself (one could argue there is signs of depression but tbh Id rule that out). In fact recently he asked why they have stopped showing my name is earl...despite him knowing it was cancelled a few years ago and he keeps thinking certain sportspeople are still playing for teams they left 3-5 years ago.

Id love to refer him to my GP but my GP recently got sacked (new management takeover etc etc) and the locums who have been there are either too full of themselves and idiotic when it comes to decision making and prescribing or the decent ones are only there on a saturday for 4 hours and is usually fully booked.

what should I do? Also he has a permanent (as they are) degenerative condition which has similarities to chronic fatigue syndrome but also constant atrophy and weakness and he has a GI condition.

furthermore he is absollutely terrified of hospitals due to traumatic experiences in childhood and he is terrified of being institutionalised (which he wont, chances are it will be an AChEi or an antidepressant prescribed but am worried of potential interactions with other drugs and his conditions)

So yh, what should I do?
I have been in this situation, albeit not early-onset.

Has he had an mini memory test at the GP at any point? And does he have any carers or anyone who lives with him?
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username1539513
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#8
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#8
Read up on dementia, research the condition, so you know what you could potentially be dealing with. Remember that him having dementia isn't an automatic death sentence, your dad will still be your dad even if he does have dementia. He might not even have dementia. Be prepared for the prospect of either becoming increasingly involved in looking after him or of getting carers in if he does have dementia and his condition worsens. Also prepare how to broach this subject with him and your family as you will need to talk about it

Source: Care Assistant in a nursing home with dementia patients
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Anonymous #1
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(Original post by Reality Check)
I have been in this situation, albeit not early-onset.

Has he had an mini memory test at the GP at any point? And does he have any carers or anyone who lives with him?


I am well versed in dementia as I deal with them and counsel them and their carers/families. He hasnt had one MMSE with the GP but have performed but I did a few at home which has further compounded my suspicions
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Anonymous #1
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I suspect he has dementia and depression but am afraid of the idiotic locums screwing him over. I have tried approaching him bu he keeps making excuses like he is lazy or he is acting but he keeps doing it at home and public. me and my mum agree something needs to be done bbut he is autonomous and is able to think rationally (~75% of the time).
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username1539513
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#11
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#11
(Original post by Anonymous)
I suspect he has dementia and depression but am afraid of the idiotic locums screwing him over. I have tried approaching him bu he keeps making excuses like he is lazy or he is acting but he keeps doing it at home and public. me and my mum agree something needs to be done bbut he is autonomous and is able to think rationally (~75% of the time).
Is there any possibility of transferring to another GP practice? My manager at work consulted several GP's on a health condition before making a decision on a health problem she was having
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Anonymous #1
#12
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I weirdly enough have worked with multiple GPs and tbh most are crap. I do however have an interview at a GP practice in my city/town next week (wish me best of luck btw as I havent had an interview for donkeys years) and if I get a job there, ill see how I can progress.
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username1539513
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#13
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#13
(Original post by Anonymous)
I weirdly enough have worked with multiple GPs and tbh most are crap. I do however have an interview at a GP practice in my city/town next week (wish me best of luck btw as I havent had an interview for donkeys years) and if I get a job there, ill see how I can progress.
I meant in the sense that your father could get diagnosed and treated by non-locum, permanent GP's but congratulations on getting an interview! I wish you the best of luck with whatever it is you applied for
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ddrrzzeerr
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#14
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There is nothing you can do, unfortunately. You can suggest he goes to a doctor but if he doesn't want to, that is his choice.
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Kindred
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#15
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(Original post by Anonymous)
OK, so I am a known health professional on TSR (id care if you not speculate or if you do, spoiler it and ill PM you if you are correct) who wishes to remain anonymous as people i know IRL scour TSR.

anyways, I have for a while suspected my dad has been developing early onset dementia since 2014, however I kept getting riddiculed by people saying im an idiot (said people no longer do so due to a) whats happening with my dad and be what has happened to others and the intervientions I have taken to aid their care despite my hospital being absolutely useless and so far behing on their guidelines).

Last year however he was made redundant and since then his signs / symptoms have worsened. He is forgetting things a lot, he is having mood swings, he has become absolutely lazy and he isnt looking after himself (one could argue there is signs of depression but tbh Id rule that out). In fact recently he asked why they have stopped showing my name is earl...despite him knowing it was cancelled a few years ago and he keeps thinking certain sportspeople are still playing for teams they left 3-5 years ago.

Id love to refer him to my GP but my GP recently got sacked (new management takeover etc etc) and the locums who have been there are either too full of themselves and idiotic when it comes to decision making and prescribing or the decent ones are only there on a saturday for 4 hours and is usually fully booked.

what should I do? Also he has a permanent (as they are) degenerative condition which has similarities to chronic fatigue syndrome but also constant atrophy and weakness and he has a GI condition.

furthermore he is absollutely terrified of hospitals due to traumatic experiences in childhood and he is terrified of being institutionalised (which he wont, chances are it will be an AChEi or an antidepressant prescribed but am worried of potential interactions with other drugs and his conditions)

So yh, what should I do?
These are a few things I would suggest. My grandfather had Dementia before he died so I have some experience and know how difficult it can be for the individual and those close to them.
A lot of these will be long term things. It feels very daunting being shoved into this sort of situation and you don't know how it's going to pan out, but hopefully some of these things will help make it a tad easier on you guys in some way.

1) Discuss concerns with the relevant people (him, your mum, any siblings etc) and look into testing him. Obviously there are other possibilities so you want to know what it is as soon as you can.
I'll assume dementia for now though...
1b) Do not be afraid to keep pushing if you need to. You know him better than most people so if you are concerned there is probably a reason to be.
When my grandad was tested he almost passed with flying colours- dr was clearly thinking we were crazy- then he was asked a simple question and go it crazy wrong (clearly frustrated that he should have known it too). If not for that question he'd have probably been cleared. Sometimes you need to make people see what you see.

2) Make and record memories. Spend time with him and enjoy yourself before he does downhill too much. Then you will know you spent as much time with him as you could and will have stories to tell him if/ when he becomes too unwell to go out.
Record old and new memories so he has something to look at and you have something to remember the fun times by. Apparently music helps people remember things so you may want to listen to music together (in the car on the way to places etc) and give him a tape of the songs. Emotions last longer than actual memories so even if he doesn't remember the outing itself, he will hopefully be happy when listening to them.

3) Look into a plan for if he becomes too difficult to care for. Hopefully he'll be able to stay at home, but dementia can get pretty nasty so it might help to have a basic plan if it does come to that so you have less to deal with at the time. Maybe save up for a good home so he doesn't end up somewhere nasty (or too much like a hospital). You can always spend that money on other stuff if it's not needed for a home.
It helped a lot knowing that my grandad was in a good home being taken care of.

3b) You can also look into things that can help you if he stays at home. Things like food deliveries can be a godsend. This was especially helpful with my grandad in early stages as he lived alone. We had a food delivery service set up who put the food into the freezer and somebody called every day to check on him. We knew how much food as meant to be there so if he couldn't remember eating we could have him count what was there and we could work it out.
Little things can make a big difference.

4) Prepare yourself emotionally. This is pretty hard to do, but having some counselling or looking into things may help. It also helps to...

5) Have a support network. This may be family and friends, counselling, a support group or whatever. Just have somebody you can talk to and lean on when things get rough. Things are always so much harder when you're going through them alone.

6) Don't be too hard on yourself. It's really easy when people are ill to put a lot of pressure on yourself to do things right. People often worry about things they never said, if they are doing enough etc.
Don't do that to yourself. Do the best you can and don't worry about anything you couldn't do. Your dad wouldn't want to to feel bad over not doing some little thing, he'd want you to be happy.

7) Have somebody go to appointments etc with him. I do this myself with important appointments because I am prone to forgetting important stuff (ADD). We also had way too many incidents with hospitals not realising what the hell dementia means.
[spoiler/] "We'll leave him in the waiting room for you to come get him" "no you will not! he has dementia and WILL run off and get lost"
*leaves medication, drinks etc in front of him* "he has dementia. He will not remember to take them. He's also too weak to reach the table anyway"
"he's fine, that's his dementia not delirium from his chest infection" "umm, no. We've been with him enough to recognise his normal dementia. This is way worse. He is clearly delirious" [/spoiler]
This is also just nice for him, especially if he doesn't like hospitals. Having somebody he trusts with him should help comfort/ distract him.

That's what I can think of right now, but please feel free to ask me any questions. I do not have all the answers, but I will help however I can. Sorry you're in such an awful situation. :hugs:
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Tiger Rag
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#16
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#16
(Original post by Anonymous)
I suspect he has dementia and depression but am afraid of the idiotic locums screwing him over. I have tried approaching him bu he keeps making excuses like he is lazy or he is acting but he keeps doing it at home and public. me and my mum agree something needs to be done bbut he is autonomous and is able to think rationally (~75% of the time).
You can request he gets seen by a certain GP?
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Kindred
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#17
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#17
(Original post by Anonymous)
I suspect he has dementia and depression but am afraid of the idiotic locums screwing him over. I have tried approaching him bu he keeps making excuses like he is lazy or he is acting but he keeps doing it at home and public. me and my mum agree something needs to be done bbut he is autonomous and is able to think rationally (~75% of the time).
My grandad was like that- very good at conversation and general intelligence so sounded fine. We (and he) knew there was something wrong cos he was forgetting to eat and didn't remember his partner was dead (despite being the one who found her).
It took finding the right examples and having a professional see it for themselves to actually get him taken seriously though.

Sounds like the best you can do at them moment is keep writing down examples to tell the GP, keep pushing and keep trying to find a GP who will take him seriously.
Think there's any chance of going private for the one diagnosis appt? It'll be expensive and you'll need to convince somebody to refer him, but it could be worth it. Proper specialist should take it seriously if you have enough evidence. Any strings you can pull or favours you can ask from your experience in the field?

It sucks cos you're kinda trying to sully your dad's name or trip him up looking for evidence, but hopefully if you find something that sounds odd enough to the doc he'll get the help he needs from it.

Oh and sort out legal stuff like power of attorney as soon as you can. It'll be important later and is a real pain in the backside. It feels bad sorting out stuff like that early, but things can change quickly so you want it all prepared for when it's needed.
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Nefarious
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#18
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#18
There's some good advice in this thread, however, the fundamental issue here hasn't really been addressed: You can't fix this for your dad.

You may feel as a professional who works with dementia all the time that you have a special duty to see that your father makes wise decisions that will lead to what you consider to be the best health outcomes. This is not the case.

Ultimately if he has capacity to make the decision not to engage with health services early, even if this decision is unwise you're going to have to live with it unless you can persuade him to change his mind. I don't blame you for wanting to push him but you also need to consider the effect that constantly badgering him about his health may have on your relationship. You should also consider that his health priorities might well be very different from yours and that sometimes screening people for disease causes more harm than good.

One more thing; in your posts concerning the doctors at your dad's surgery you present as constantly angry and negative. I'm sorry if you've had a bad experience in the past, there's plenty of crappy doctors out there. Coming to the point, you should seriously consider whether you are bringing your preconceptions with you into your encounters with health services. As a professional yourself you will have encountered the 'know it all' relative from hell countless times, and will know full well how unhelpful they can be, just make sure you're not becoming one!

NB: The previous paragraph is not intended to pass blame onto you, I don't know enough about the history here to make that kind of judgement. However I've encountered that kind of attitude from relatives (including medical professionals) before, often to the detriment of the patient caught in the crossfire. If it doesn't apply to you all the better ignore all of this! I just wanted to address it just in case.

At the end of the day, unless you're using medical power of attorney to change your dad's GP surgery without his consent (*) you're going to have to work with his GP as the gatekeeper to other services. Forming a good relationship will help with this even if you have a professional disagreement with their procedures or attitude.

Good luck, with GP and social services as stretched as they are I do not envy your position.

(*) Not going to recommend this btw, I've seen it before and it did not end well for anyone involved.
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