How often do Alzheimer's/Dementia sufferers have mental health checkups?

[LucyJP]

Hi,

My mum has been diagnosed with AD now since December 2009. In that time she has had one home visit from her consultant and 2 assessments from a CMHN. The last one being nearly 2 years ago, and that last assessment is because I demanded one. I actually got laughed at because, and I quote "she's lucky to get one, as most patients aren't currently getting one for around 4 years!" I found this disgusting. But nonetheless I pushed and they came out. Since then, I've heard nothing. My father has since passed away and my mum has now had a huge decline over the last 2 months. To the point her speech is more or less non-existent, she's really unsteady on her feet and her incontinence is at the point she's peeing on the floor as her pads are becoming saturated and she's either forgetting or can't be bothered to change them.

Mum is in a sheltered accommodation care home with a current level 2 care. Mums been admitted into hospital with pneumonia a week ago. She's since not been able to swallow her food without choking and has been "nil by mouth" since her admittance a week ago. She's now being moved onto the neurology ward for speech and language therapy to get her swallowing safely again. Now the care home have requested social services are involved ready for her discharge and they can implement the next care level that he'll need.

I would love to know if anyone has been in a similar situation and whether mum should be having more regular mental health assessments, be seeing her consultant on a regular basis, be attending clinics to help her day to day and whether she would benefit more gong to the local mental health hospital for assessment as opposed to the neurology ward? I'm at a loss as to how things should be working, and myself and my family are all concerned she's been neglected by the local mental health team. Or would that be her GP's fault?

Any advice would be greatly received as it all seems a little too lapse daisy for my liking!

Thank you!

 

[Countryboy]

Hi if your on medication such as DONEPEZIL “Aricept” then you will have two visits from an Occupational Therapist or memory nurse to carry out test they then report back to your GP who prescribes the medication , a further visit with your consultant if your driving licence is renewed on a 12 month basis

 

[Austinsmum]

Further to Tony’s reply, I asked our CPN what the point was of her coming out for mum’s memory test. Her reply surprised me. The drugs prescribed to slow the decline in early to moderate AD sufferers are expensive, so they send CPN’s out to check on the efficacy of these drugs. Once the patients decline below a ‘level’ then the drugs are deemed to not be helping - so they are withdrawn.
This is due to guidelines set out by NICE to save money, not to ensure mental health care for the patients.
That’s a bitter pill to swallow.

 

[Vabjgb1]

Check ups

I was wondering the same as no one seems to be bothered about dad who was diagnosed about 8 months ago, had about 3 visits to consultant and that's it, does not want to see him for a year.
Where do we go from here, no help.
Just feel like all we do now is wait for him to get worse.
The thought of him getting to the point of not knowing us is so hard, and not having anyone to talk to outside of the family who maybe able to help.
Well I feel once you get old they don't want to know anymore.
Sorry to go on, but as you can imagine its so frustrating sometimes.

 

[sah]

Hi:

Does it vary according to consultant/area? My husband now has a test once every six months-and he's still fairly independent, able to drive and cope on his own whilst I'm at work. He has gone through huge personality changes but does not need any additional support yet.

Sounds like some shouting needs to happen; people who know better than I do will hopefully point you in the right direction. Good luck!

 

[Genesis]

Yes this appears to be happening to us too. My husband has early stage Alzheimers but has unfortunately been unable to tolerate all medication offered so far, due to side effects. It now appears that, should he remain off medication, he will be discharged from the Memory Clinic, and subsequently, I believe, have no further support from them.I might add that the thought of this is causing my husband great distress and in his words he feels 'dropped'. I will of course first check that this will be the case but if so, what next? Where do we go from there???????? I will be raising my voice VEREEEE loudly!!!!! I too would appreciate any advice anyone might have.

Love to you all
Genesis xx

 

[Vabjgb1]

No help

I see a lot of people have memory tests, my dad gets nothing, its a fight for everything to make life easier for my parents.
Mum blind, dad was her Carer, and we have not had any support at all.
Now social services are now saying they cannot do meals for mum only dad.
What a joke.
Has anyone heard that they may not get into a home unless they have the right criteria, so what happens to them when they get worse.
They have worked hard all there life's and did not ask for this, and this is they way they are treated.
So worried what is gonna happen to them.
Has anyone had any problems like this.

 

[LadyA]

I'm sitting here stunned!! We think the system here is bad and breaking down!!

Maybe I've just been "lucky" that my husband needed anti-psychotics, because he has been seen at the Psychiatry of Old Age Clinic regularly for the last two years - initially, while they tried all other solutions other than anti psychotics, we were in there every two weeks, and sometimes every week. Then when he was put on Risperidone, he has been monitored every two months. He is also regularly seen by his GP - he told me that if I have even the vaguest suspicion that William might be brewing an infection or if there is anything that strikes me as odd or different in his behaviour, then to bring him in for checking, as "what we have to aim for is to keep him out of hospital if at all possible." - according to William's GP, hospital is no place for elderly people who are sick, and certainly not for people with dementia, if it can be avoided. (He reckons they will always come out having deteriorated, with the upset in routine and change of environment).

But definitely - you need to start rattling a few cages, shaking a few trees or whatever it takes! You just can't be abandoned to cope alone. Sadly though it seems that with resources stretched, unless you make yourself seen, heard and felt, you will be ignored!

 

[bemused1]

I'm sitting here stunned!! We think the system here is bad and breaking down!!

Maybe I've just been "lucky" that my husband needed anti-psychotics, because he has been seen at the Psychiatry of Old Age Clinic regularly for the last two years - initially, while they tried all other solutions other than anti psychotics, we were in there every two weeks, and sometimes every week. Then when he was put on Risperidone, he has been monitored every two months. He is also regularly seen by his GP - he told me that if I have even the vaguest suspicion that William might be brewing an infection or if there is anything that strikes me as odd or different in his behaviour, then to bring him in for checking, as "what we have to aim for is to keep him out of hospital if at all possible." - according to William's GP, hospital is no place for elderly people who are sick, and certainly not for people with dementia, if it can be avoided. (He reckons they will always come out having deteriorated, with the upset in routine and change of environment).

But definitely - you need to start rattling a few cages, shaking a few trees or whatever it takes! You just can't be abandoned to cope alone. Sadly though it seems that with resources stretched, unless you make yourself seen, heard and felt, you will be ignored!

Can we please all move in with you? And overwhelm William's doctor?

 

[jaymor]

If one doctor can do it why can't others, specially the ones working in dementia. Why can't all other professionals dealing with dementia work and care as William's doctor does. We should expect more from those trained in dementia. William's doctor is a general practitioner and he has it right. Well done William's doctor.

Jay

 

[Witzend]

I can't help thinking how things have changed in the part 10-15 years. My mother was diagnosed just with a short memory test maybe 12-13 years ago. Several years before that my FIL was diagnosed with a similar memory test, but nobody could tell us what sort of dementia he had - they said they'd only be able to tell post-mortem. There were no scans for either of them, no further tests, no CPNs or anything else.

At one point I was desperate for help with my FIL, since he was prone to very violent rages. The GP just shrugged, said there was nothing he could do, any medication would probably only make him worse.

My mother was given Aricept, but probably far too late. It didn't help at all, and in fact only made her 'nasty' symptoms worse. In a way it was probably a good thing that we didn't have a lot of appointments to go to, since getting her out of the house at all was a nightmare and would make her very stressed and fretful. I don't suppose she'd have taken kindly to anyone calling at the house, either. She was naturally suspicious anyway and just became more so.
And she had a violent aversion to anyone she didn't know referring to her as 'Mum' in her own presence. So many professionals do this - I can't think why, it always strikes me as rude and patronising (albeit in that cosy, well-meant way). I don't know why they can't use people's names, or at least say, 'your mum' or mother.

 

[westlake]

my great aunt had someone come in last yr to do a memory test because to passed it by 85% they said that they didn't need to come and see her again unless she got worse the thing is she still remembers most things for a while its the things that she sees that obviously arn't there that is becoming the problem. nobody seems to be interested, she has carers who go into her twice daily..morning for 1/2 hr and late afternoon for 15 mins and only 1 of the carers noticed that she had something wrong because my aunt talked to her about things that were happening around her so they thought she may have urine infection which on top of what she goes through normally makes things 10 times worse, things eased of a little but now she believes people have moved in under her house and are coming through walls and touching her heating and electrics and sprinkling things in her food and on her when shes in bed, she said she needs help to get rid of these people but dosn't want to tell the carers because she thinks they will take her away from her house and shes aderment she does not want to lose her home and end up in a care home, trying to convince her that there is no one there without patronising her is hard you get pulled into it with her its painful to watch as i feel useless , im her only living relative and have a family of my own so i am between the 2, i spend as much time with her as i can but it is hard especially when im working and sorting the family. she lost a good friend just before xmas and i think this has made things worse as well as she used to go and see her weekly so she only has myself and my family who vist. i can admit it is getting very hard especially when you have to leave knowing that as soon as i get in the phone could ring with her worrying about things going on in her house.

 

[westlake]

my aunt is 91 and was diagnosed with onset dimentia nearly 3 yrs ago i have had to do all the asking for doctors,for specialists etc. my aunt was given anti depressions from the person who tested her memory but she refussed to take them can some one explain to me how these were supposed to help i don't know what whey were called. i was told they would help ease the things she's seeing that isn't there but how?

 

[LadyA]

If one doctor can do it why can't others, specially the ones working in dementia. Why can't all other professionals dealing with dementia work and care as William's doctor does. We should expect more from those trained in dementia. William's doctor is a general practitioner and he has it right. Well done William's doctor.

Jay

William's doctor's dad had alzheimer's disease before he died several years ago. I didn't know him, but a neighbour of theirs told me that he would regularly wander from home, be found by someone who knew who he was, but not where exactly he lived - and be delivered to the doctor son's surgery safely! Nothing like experience, is there?! But yes, his GP has been wonderful - I visited him alone years ago, when I was noticing changes in William's behaviour. He not only was willing to discuss William with me, he believed me, and called him in for a check-up. Although at that stage nothing was showing in tests - William continued to score very high on memory tests for years - the GP also felt something wasn't right, and referred him on. But at that stage, William only went to the Specialist once, and as soon as he realised he was a "Psychiatrist" he became enraged and refused to go back. Until several years later, when he had deteriorated to where his condition was very obvious to everyone, even those who had been telling me I was making it all up! But William's GP had arranged for me to get Carer's Allowance, even though the form had to be signed by William, and there was a Medical section in the form stating why he needed full time care and/or supervision. That had to be filled in by the GP first and I had explained to the Doctor that there was no way William was going to sign the form, because I couldn't let him see a diagnosis or he'd go completely apes**t! - so the Doc put in that William was suffering from Alzheimer's Disease/Dementia on the medical section of the form, then removed that section of the form, told William that he wanted him to sign this form so I could get a little extra money from the Govt. that would help with paying bills etc. as he got older! William happily signed the form - and at that particular stage he was paranoid & suspicious enough to read every word on it! - the GP put the medical section back in and we sent it off! William did need full time supervision at the time - I was forever covering his back, apologising and explaining to people, heading him off from making totally outrageous "business propositions" to people, which in reality were off the wall propositions to get him free holidays or free equipment or something!! A horrible phase that I am so glad is past.