• 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.

Feelings of despair and exhaustion.


Registered User
Jan 8, 2016
Following mums continuing battle with illness and dementia she has been residing in a specialist dementia care home with nursing care since February.
She has amongst other problems, macular degeneration, stage three kidney desease, is in heart failure, unable to weight bear, relays on hearing aids JAS Altered states of consciousness, cognitive problems, unable to carry out tasks, doubly incontinent. And relys on others totally for all personal care and stimulation but she was not accepted for CHC funding.
The specialist care home are unable to provide one to one help for her.
She is left alone for very long periods at night calling for help as she is unable to use a bell.The staff say it's normal to leave her like this and she ends up sobbing hard until a family member go in to reassure her or she falls asleep exhausted.
We have walked in on her in the later mornings asleep on her breakfast without any staff around her to prevent any choking.
I have tried in vain to get help through social services to get more support for her as she responds to destraction.
Social services are saying that she does not qualify for any more help even though they have a contract with the home for 4 hours a day one to one care which is not being met by the home.
As a family we are exhausted trying to help mum and liase with the home and social services.
There are clear issues with the home and we are being faced with having to move mum but I feel her mental health issues will continue to spiral.
She is on rispiridome and antidepressants but these do not appear to be offering much respite for her.
I feel that social services have been dragging heels to help and are not fulfilling mums needs .
Any helpful advice would be very much appreciated here.


Registered User
Sep 5, 2016
Hi, I'm afraid I can't offer much advice but can offer support in the fact that you are not alone. We too are in despair. My dad is currently in hospital, an assessment was done 8 weeks ago and we have only just got the letter that he is also NOT eligible for CHC. My dad is completely bed bound, needs everything doing for him, stage 3 kidney disease and high risk of aspiration. I really don't know how they qualify for CHC, it is beyond frustrating.
At the end of the day, we have to be their voice, and all we can do is try our very best to fight for them.... He who shouts the loudest! If you weigh up the pros and cons of moving her, write it down on a list, which ay help. Do you think your Mum will be worse if moved to a new home with better care or better if she stays in the home with the right level of care provided?
Last edited:


Registered User
Aug 24, 2013
Assuming she's in Poole too, fill in the form on the link below. Phone calls do nothing and don't leave a paper trail or any evidence of what was actually said so avoid the phone at all costs.
Say "no" to question 3 as it's now a different matter to what's happened before (if you have already contacted them on past issues) this is a new situation.
Once requested, an assessment for a vulnerable adult has to be done by law, remind them of that and their legal responsibilities to her.
Better to fall out with social services and have them see you as a pain than fall out with the care home, if the LA kick the home's ass they may pay more attention.