Tag Archives: support

More dementia information and support needed

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.

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Carers need a life of their own

Isolated, lonely, marginalised; that is how the majority of carers feel, according to a survey published to coincide with this week’s Carers Week.

The survey, which took in the views of more than 3,200 carers across the UK – the majority of which care for more than 50 hours per week – paints a fairly bleak picture of a carer’s life.

For example, 76% said they feel like they have no life of their own outside of their caring role, with a similar percentage saying they have lost touch with family and friends as a result of being a carer. Many feel they have no time to socialise, for romantic relationships or even to have children.

Being a carer also adversely impacts on many financially – 4 out of 5 report being worse off, with more than half having to give up work to devote more time to their role. This also exacerbates many carers’ sense of isolation, with work often a vital means of social interaction.

It makes for depressing reading. What makes it worse is that the survey also reveals what many carers feel they need to make their lives better – and they are relatively modest demands. The 4 main needs are:

  • Access to relevant and practical information, to help them with their caring role
  • The opportunity to take a break when they need it
  • Support at times of crisis
  • Financial support.

To my mind, there is nothing in that list that cannot be achieved, if the political willingness is there.

There is the possibility that some of it may be realised in the relatively short-term. The government has said it is committed to providing a week’s respite for carers, although I believe this is only for carers of severely disabled children (please correct me if I’m wrong) and I haven’t yet seen a timescale for when this might be implemented.

Putting mechanisms in place to provide better information for carers and more support at times of crisis are also achievable at a local level through better working with local authority social services and independent social care providers.

The only demand that may not see any action is that of financial support. Current media speculation about the forthcoming cuts to public spending in next week’s Budgets predicts cuts in benefits so any significant rise to the Carer’s Allowance would seem unlikely. I don’t agree with that, but that’s just the way I think it will go.

These demands really need to be taken into account in the forthcoming independent commission on the future of social care.

Indeed, one of the criticisms of last year’s Big Care Debate and subsequent White Paper – now consigned to the dustbin, of course – was that carers seemed to be largely ignored in it. This always seemed like a huge oversight – not only are carers a vital part of the system, they are often the people who know the most about caring and what service users need.

Hopefully the new commission will take more notice of their opinions and needs and surveys like this will not make such troubling reading in the future.

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