• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

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  1. L

    Dad is now dying and can’t access CHC

    Thank you x
  2. L

    Dad is now dying and can’t access CHC

    An update on dad, he has made a brilliant recovery. After 2 months in hospital very poorly and many battles with the nhs, we managed to get him to a discharge to assess bed at a community hospital. He is now walking with a frame and eating and drinking after 2 months of being bedbound. I...
  3. L

    How do we change the way NHS care for PWD in hospital?

    Hi, I had 2 similar experiences with my dad. 20hours and 27 hours on a trolley in A&E. The place was Shocking, many vulnerable, elderly people in various states of undress. Many distressed and on their own. Medical staff too focused on looking at computer screens rather than interacting with...
  4. L

    Assessment in Hospital Leading to a Placement

    An update on dad, he is still in hospital and actually very content. I think he can relate to hospitals!! Still bedbound, incontinent and staring at the ceiling most of the time, very distant. He is eating now but not drinking. He has lost his cough reflex, we watch him carefully while...
  5. L

    Assessment in Hospital Leading to a Placement

    I really feel for you, we are just taking one day at a time. Like you, the discharge person has backed off. I suspect, there are no intermediate bed available. Thankfully, dad seems content most of the time. We have been unable to find a nursing placement locally, so who knows where he will...
  6. L

    Assessment in Hospital Leading to a Placement

    Hi, my dad currently in hospital following a fall and pneumonia. The consultant has said he has months to live. We have given notice at his current care home as he now needs nursing care. So effectively, he has nowhere to go, they won’t assess him for CHC funding whilst in hospital, he has...
  7. L

    Dad is now dying and can’t access CHC

    Thank you, it is very worrying when they can’t swallow properly. Another thing I have noticed with dad, he has lost his cough reflex. This also puts him at risk of further bouts of aspirational pneumonia. X
  8. L

    Dad is now dying and can’t access CHC

    Hope your dad is ok and content. It must be a relief for you to know he is safe x
  9. L

    Dad is now dying and can’t access CHC

    Thank you for your support, it’s strange but dad seems calm in hospital, I think it is easier for him to understand and remember the hospital environment x
  10. L

    Dad is now dying and can’t access CHC

    It is absolutely shocking the way dementia patients are treated in hospital. I am convinced that even the nursing staff don’t have a clue. X
  11. L

    Dad is now dying and can’t access CHC

    Hi, dad’s been in hospital 3 weeks now and just started to have small amounts, he needs soft food but no one takes any notice of the SALT notice. He hardly drinks and he is dehydrated, staff don’t monitor liquid or food intake. Dementia patients get a raw deal in hospital , the whole situation...
  12. L

    Dad is now dying and can’t access CHC

    I know, unbelievable, dad had “goodie” bags over Christmas with mince pie, xmas cake, crisps and cheese and crackers. I dread to think what would have happened if he tried to eat them xx
  13. L

    Dad is now dying and can’t access CHC

    Good for you, they don’t seem to take any notice of what is on there at the moment x
  14. L

    Dad is now dying and can’t access CHC

    That’s a great idea, there is the SALT diagram and prompt to drink notice but they don’t seem to take any notice. Thanks for your suggestion. X
  15. L

    Dad is now dying and can’t access CHC

    I really appreciate your support especially as you know the local patch. I visit dad every day to make sure he is being cared for. I am always there at meal time because they give him standard meals even though he has been assessed by the SALT team as needing soft food. He was choking...
  16. L

    Dad is now dying and can’t access CHC

    Thank you for your advice, it is all a minefield. It’s about time we all joined forces and challenge the system collectively. There is non compliance to the framework by trusts, there is bullying by Hospital staff if you complain to Pals. In the midst of this, our loved ones suffer and die...
  17. L

    Dad is now dying and can’t access CHC

    Thank you for your support, I’m hoping that things start to happen soon and he is moved for assessments xx
  18. L

    Dad is now dying and can’t access CHC

    Thank you, I will xthank you so much fo Thank you so much for sharing your experience with me. It seems you were in exactly the same place as us. We have not seen or heard from any social workers. Like you Since complaining to PALs and CCG, no one seems to want to talk to us. It is a...
  19. L

    Dad is now dying and can’t access CHC

    So very true, I am finding it very difficult coming to terms with my emotions. I think the battling is keeping me going at the moment. I feel in the middle of a whirlwind. X
  20. L

    Dad is now dying and can’t access CHC

    Dad has been in a care home for the last 4 years but he is unable to return as they can’t meet his needs. To be honest, dad is oblivious to his surroundings. They have told us fast track is not an option for him. Basically, he had no where to go at the moment x