Dementia nurse

Discussion in 'Recently diagnosed and early stages of dementia' started by yorkie46, Nov 24, 2018.

  1. yorkie46

    yorkie46 Registered User

    Jan 28, 2014
    216
    Southampton
    Does anyone know if every person with dementia should have a dementia nurse or is this dependent on the local health authorityauthority?
    When my husband was diagnosed recently with FTD and some vascular I asked if there was anything on offer for him I was told no. Seems strange that all support that was offered was for me as the carer.
     
  2. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    519
    In my MIL area there isn't a specific nurse . She was in a London borough that had a one-stop type shop called a dementia hub and a support worker used to call me every few months to see how things were going.
     
  3. yorkie46

    yorkie46 Registered User

    Jan 28, 2014
    216
    Southampton
    Thanks Rosettaston57, just something else I need to look into. I was disappointed that when my husband Washburn his diagnosis recently all the support on offer seemed to be for me, they couldn't offer anything him other than a day centre which he won't go to!
     
  4. CardiffGirlInEssex

    CardiffGirlInEssex Registered User

    Oct 6, 2018
    13
    My mother was diagnosed a few months ago and does have a specific dementia nurse, however it seems to be mostly up to us to contact the nurse, rather than the nurse making scheduled visits. So far I must say the nurse has been very helpful when I do phone and takes whatever action we agree is necessary. This is in South Wales where the NHS differs in a number of ways from that in England.
     
  5. canary

    canary Registered User

    Feb 25, 2014
    7,577
    Female
    South coast
    Down here on the south coast I was offered nothing more than a few leaflets and have had to do all the finding out myself. Fortunately, one of the leaflets was for the Alzheimers Society and I have had the best of advice from here.
    My OH was only offered day care after a needs assessment and he refused to go too.
     
  6. yorkie46

    yorkie46 Registered User

    Jan 28, 2014
    216
    Southampton
    I've been told today by social services, on south coast too, that as my husband doesn't need help with personal cafe they won't do a needs/care assesment. They have nothing to offer me for him. He refuses to go to any sort of social group without me. I too have been in touch with Alzheimer's society. So it looks like the only way to get him out is for me to go with him. This means I NEVER get time alone at home.
     
  7. Rosettastone57

    Rosettastone57 Registered User

    Oct 27, 2016
    519
    What about a befriending service or a sitting service? The care agency my MIL used provided a sitting service at home paid of course. She had a befriending service who took her out when she was first diagnosed but eventually she just refused to go anywhere
     
  8. yorkie46

    yorkie46 Registered User

    Jan 28, 2014
    216
    Southampton
    Thanks Rosettastone57, I would be happy for something like that but he won't have anyone come to the house of go out with anyone, says he doesn't need it and only wants me to look after him. I can leave him, he doesn't wander, just sits in a chair most of the time and falls asleep in front of tv. He is able to make himself a hot drink and some lunch if he has to but he couldn't cook a meal. If I'm away he has ready meals or goes to our daughter. I guess I'm just stuck with things as they are until he gets worse and can't be left it do things for himself. The other problem is that his mobility is poor, he walks very slowly with a stick when we are out and has to keep stopping because of pain in back, hip or ankle! This means that I can only stroll which isn't good for me. I feel as though I keep looking for places and groups I can take him to but he either didn't want to go or doesn't appreciate the effort I go to.
     
  9. DennyD

    DennyD Registered User

     
  10. DennyD

    DennyD Registered User

    This is interesting! How and through whom were the nurse's services offered to you? We live in South Wales and not once has a 'Dementia Nurse' been suggested to us. My husband was diagnosed 3 yrs ago. The only support for him is through Alzheimer's society or going private. Not once has he been seen by his GP, the only 'nurse' he meets are those from the memory team.
     
  11. CardiffGirlInEssex

    CardiffGirlInEssex Registered User

    Oct 6, 2018
    13
    They are in Cardiff, don’t know if that makes a difference. The dementia nurse is attached to the memory team but so far she has been helpful albeit it’s up to me/us to contact her. She has visited Mum twice so far but there isn’t a regular schedule as such, it seems to be a case of getting a visit when something changes e.g. starting of stopping/changing medication.
     
  12. yorkie46

    yorkie46 Registered User

    Jan 28, 2014
    216
    Southampton
    My husband is only recently diagnosed but has been to memory clinic in and off for last four years, they kept discharging him. Now at last they've diagnosed ftd. He won't be seen by anyone from the memory clinic again. I specifically asked the consultant if she would see him again but she said no. It's all down to the GP now.. I have an Admiral nurse but there's apparently nothing provided for my husband. Seems very strange to me!
     
  13. canary

    canary Registered User

    Feb 25, 2014
    7,577
    Female
    South coast
    Memory clonics often dont offer support. The one mum went to only diagnosed her Alzheimers and started her off on donepezil, then they discharged her back to the GP. Its a bit of a lottery as to what the memory clinic in a particular area offers, but I think that more and more of them only want to diagnose and then discharge back to the GP on the grounds that there is no treatment for dementia (only various symptoms that they may or may not get)
     
  14. Philbo

    Philbo Registered User

    Feb 28, 2017
    505
    Male
    Kent

    Same here in East Kent - wife was diagnosed by the memory clinic nearly 5 years ago. After 2 years, she was discharged back to GP and only support we had has been whatever I have been able to find myself.

    Only contact from GP has been for her annual diabetic check with the nurse (bit of a waste of time as we couldn't weigh her (they only had stand-on scales which she wouldn't stand on), checking her BP was a mission as she wouldn't hold her arm still and the prick test on her feet just got a load of giggles!:D

    Thinking about it, she was called in for a "mental health review", which turned out to be another "tick box" exercise.

    I have never been made aware of any dementia nurses, so I assume that we don't have any in our area? I did get to speak to an admiral nurse when my wife was discharged (after I asked the consultant "what the hell to I do now then?") but to be honest, she was not much help at all.
     
  15. DennyD

    DennyD Registered User

    So it tends to be more 'medical' support, rather emotional as in supporting PWD in 'coping' with dementia?
     
  16. canary

    canary Registered User

    Feb 25, 2014
    7,577
    Female
    South coast
    Yes, precisely.

    Mind you, often the person with dementia is not aware of any problem and therefore does not need any help with coping :rolleyes:

    I wish there was more help for carers to cope, but this is placed in the "social" side rather than the medical............
     
  17. yorkie46

    yorkie46 Registered User

    Jan 28, 2014
    216
    Southampton
    I have to say I have been fighting for a diagnosis for my husband for the last four years both in the hope there might be some help for him but also for myself. I'd been telling doctors about his behaviour and limitations but felt that nobody really believed what I was saying. Now I think they do but they still have nothing to offer. Unfortunately until he becomes much worse and I can say he has to go to a day centre of for respite care i don't things will change. He is able to do quite a lot for himself but he has no understanding of his dementia and how it affects me as a carer. He will pay lip service to things but his understanding just isn't there. The admiral nurse has told me that I should just make decisions about things that need doing and just tell him but that isn't easy. I don't feel he's at that stage quite get but probably fast approaching it. I find it very difficult when we have no idea how the disease will progress or at what speed!
     
  18. DennyD

    DennyD Registered User

    Yes I certainly recognise the exclamation by my husband that he's fine! I think I had expected some more emotional support for him in the early days, just after diagnosis or even perhaps for both of us together. The focus seemed to be on activities eg film club, singing etc, rather than giving us both guidance on what it means to our lives. You just feel left with zillions of leaflets. Although I have to say that the Alzheimer's support worker has been a great comfort to me.
     
  19. longlostfan

    longlostfan Registered User

    Aug 14, 2016
    109
    When my OH had his annual check up last year the surgery insisted we see the dementia nurse rather than the usual nurse, although it was just the standard yearly blood pressure, weight, and fasting blood test. Because the dementia nurse was sick the appointment was cancelled twice, and when we finally got to see her the first question she asked him was ”now, R, do you think your memory is better or worse than last year”?
    Three guesses for his reply lol.
    Still, it gave me a bit of a laugh, if rather a wry one ......
     
  20. yorkie46

    yorkie46 Registered User

    Jan 28, 2014
    216
    Southampton
    Incredible isn't it! I really hope people employed to work with patients with dementia catch up soon with his to talk to them. That doesn't mean speaking to them as though they're idiots eithereither, sadly I've experienced that too!
     

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