There are an estimated seven million carers in the UK – that’s one in ten people. Three in five of us will be carers at some point in our lives. Yet how well equipped does this vast army of everyday heroes feel? How supported and how well understood?
Carers talk about feeling completely at sea, giving up their own lives, and being passed from pillar to post as they try to unearth the right information.
One former teacher, whose partner suffers with dementia, said their experience of getting a diagnosis from their GP left them high and dry. She said: “We were literally there with one doctor and no support worker or anything and he gave me a computer printout on what it means to have dementia. That was it.”
In response Healthwatch Essex has produced a Dementia Handbook for Carers. The comprehensive guide contains all the information carers should be given at diagnosis. It includes chapters on understanding the condition, medical terms (including the sometimes complicated names for medication), space for record keeping, information about where to turn for legal advice, available technology and even details about specialist holidays.
The record keeping section, for example, gives busy carers a prompt to write down the kind of information which can be easily forgotten. Which medics have you seen and when? What did they advise? What suggestions or pledges have social services or care agencies made? These conversations, which can be so important to the carer or dementia sufferer, can easily be forgotten in the mists of time and stress of the situation.
The aim of the handbook is to reduce the pressure on relatives and friends of people who are already suffering, already scared about the future and confused about where to turn. Its positive and easy to read format means that instead of being handed just another leaflet, carers can find essential direction and advice at a time when they most need it.
Contact your local Healthwatch to see what help they can offer in your area by visiting the website www.healthwatch.co.uk/ or telephone 03000 68 3000
Anna Faro, Healthwatch Essex
