It is a word that strikes terror into the hearts of many older people: dementia. So it seems surprising that there still seems to be a lack of good-quality information about the condition and how to deal with it, according to a new survey.
Data from YouGov, published to coincide with Dementia Awareness Week, reveals that in a poll of some 2,000 adults without dementia 31% would not know how to get information and support if they received a diagnosis.
At a scary time – YouGov reports that 74% of respondents would feel frightened after being told they have the condition – people need all the information and support they can get in order to get to grips with what the condition is and what it means.
Indeed, anecdotally I have heard about people receiving a dementia diagnosis but getting hardly any support from health services – the only information they found was self-researched on the internet. This may well be an isolated case – there are some very good services out there – but it illustrates the inconsistency of services across the UK.
Ruth Sutherland, acting chief executive of the Alzheimer’s Society, has called directly for things to change. “It is terrible that so many people would not how to get information and support following a diagnosis of dementia. We need better awareness and information so that a diagnosis of dementia is not such a frightening experience.”
Whether that information is through leaflets and factsheets given at diagnosis, better signposting to specialist support such as memory clinics by GPs, TV advertising campaigns about what dementia is or other means, more information could make a stressful time a little less hard to deal with.
Better information could also help to deal with some of the stigma that is still associated with the condition – 10% reported that they would feel ‘ashamed’ to have dementia – which can also hold people back from seeking support once they have been given a diagnosis.
Dementia is not a death sentence and does not stop people living active and full lives – including developing new interests – and this should be at the heart of information given to people, along with practical advice about living with the condition.