A recent conference for carers in Altrincham sought carers' views on the relationships between health and social care providers and the carers themselves. The key issue was one of information; how it is communicated, how much, how comprehensive, how timely.
The problem is that caring is not something that necessarily happens by choice, nor does it have a definite 'start' point, at which people know what is happening, what they need to know and where they can go to find it. Information is therefore often passed on by chance, and possibly after a period of difficulty which may have been helped or prevented by having information in advance. Families often find themselves in situations that are life changing - a diagnosis of a condition that may not be cured, or which may be degenerative, an acquired injury - and reliant on someone, a medic, social worker, etc - to anticipate what they need to know.
It would seem logical that in this age of information and communication - never before have we been able to impart knowledge so quickly to so many people - provision of information would improve as means of communication also develop. However the downside of ease of communication is that quality cannot always be assured, neither can appropriateness of information, and it is this need for good quality information, given in the right way at the right time that means skill of judgement must be employed by those in the professions of care.
When looking at dementia, the difficulty of appropriate information provision is magnified due to the variety of presentations across three or more generations. This is not unique to dementia - every illness is subject to individual circumstance - but the interaction of social and medical factors, the differences in severity at which people ask for help, the variable diagnoses which implicate different treatment pathways, the different responses from people with dementia and carers in coping with a diagnosis, mean that dementia poses a particular challenge for agencies involved.
Carers at the conference asked whether information about all available services could be posted in one place - which sounds like a stonking idea, until you think about the number of different services that people want to access, which come and go as funding is provided and stopped, and staff, volunteers and entrepeneurs move on, venues and costs alter, regulations change. To keep this information comprehensive and up to date would require significant attention, and to enable people to access information that is appropriate for them and not misleading, and accessible to all at the time they want it, means an element of human interaction is necessary. This is what makes information provision so difficult, as practitioners we can't guarantee to seek out everyone who wants help - the population affected by dementia is fluid and sufficiently numerous that those who accept contact and support straight away are going to be more visible to services than those who are initially reticent.
The nature of caring is such that a reluctance to receive support doesn't indicate that everything is ticking over nicely - and it may be that a misapprehension has led to this reluctance, so avenues for accessing information need to be open, visible and gently assertive over time to ensure they can be accessed at any time.
We can only hope that changes to service provision won't damage our abilityto manage this information provision in such a way to enable as many people as possible to access what they need, at the right time.
It would seem wrong to talk about information and not point people to key websites in Trafford.
www.ageuk.org.uk/trafford Age UK Trafford's local website
www.trafford.gov.uk/myway Adult Social Care in Trafford
http://www.traffordcarerscentre.org.uk/ Supporting all carers of adults in Trafford
http://www.traffordwellbeing.org.uk/ Details organisations helping people in Trafford
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