Tonight, on Dispatches (Channel 4 – 8pm) is going to be looking at support (or rather the lack of support) that is available for people with Alzheimer’s Disease and their families and carers in the UK.
(who will be presenting the programme) over the weekend. She is a breakfast television presenter who quit the ‘day job’ this year in order to spend more time looking after her father and her children.
She has been researching care for people with Alzheimer’s and commissioned
A YouGov survey of 767 carers of Alzheimer’s sufferers reveals that 27% of sufferers waited three years or longer for an official diagnosis. Another 17% never received one.
Philips goes on to explain some of the further findings of the survey
“The shocking findings of our survey of carers revealed that 41% got little or no respite care and more than half received no help at all from social services. In addition, I discovered that some victims never get a formal diagnosis.
The survey also found that 19% of carers sometimes or often feel threatened by the sufferers they care for. Two-thirds said they would like training.
Now, working within a service that provides support and care for people with Alzheimer’s, this survey and the implications of it, did hit home to me.
There is, without question, a question of resourcing. I am also aware that while we now (with our new configuration) have a spanking new ‘Memory Clinic’ which has been specifically set up to speed up diagnosis and information – that has only been in place for a couple of months. I think it is an aspect of care that will be promoted when the government implement their new ‘Dementia Strategy’.
It may go some way towards signposting patients and carers towards assistance that would be available to them.
Support is more of a mixed bag though.
The team I work in does not see people who have dementia unless there are what is referred to as ‘management difficulties’ or ‘consistent refusal of care’.
In other words, someone that has dementia at an earlier stage will, after receiving diagnosis, be referred back to the Community Care Team to put in care and provide support – the idea is that the Memory Clinic will retain contact and medication (if necessary) while Social Services will be involved if direct care or carer support is needed.
We get the referrals back when things usually reach a later stage and things begin to fall apart either by refusal of care or carer stress becomes more evident.
What is obvious is that without initial diagnoses it is hard to access these services.
More than a few times, I have been to visit people and noticed that their spouses are displaying very obvious symptoms of cognitive impairment and refer the spouse back to the team myself. I wonder if I had not been already present in the situation, how likely it is that those people would have received referrals into our team and into the formal support services that exist.
Without doubt there will be a question of resources and the amount of people who could benefit from services versus the amount of resources that are available.
Anyway, it will be interesting to see the programme and I expect to comment after the event.