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Study launched to assess role of neighbourhood in dementia

A major new study will investigate the role of neighbourhood in the experience of people with dementia.

Researchers at the University of Manchester will lead a European team for the five-year ‘Neighbourhoods and Dementia’ study, announced this week at the G8 dementia summit.

It is one of six research projects announced by the Economic and Social Research Council (ESRC) and National Institute for Health Research (NIHR) as part of a £20m funding boost designed to take understanding of dementia to a new level.

The summit, attended by ministers, researchers, pharmaceutical companies and charities, has been looking at ways to attract new funding and generate innovation in dementia research.

It follows on from last year’s comments by the prime minister David Cameron that the country is facing a “national crisis” due to dementia.

Professor John Keady, of the University of Manchester, is the lead researcher in the ‘Neighbourhoods and Dementia’ study.

He said it will aim to “celebrate the achievements, growth and contribution that people with dementia and their carers make to society”.

It will be the first time a large-scale research programme has involved people with dementia and their families taking on a variety of roles, from advisers to co-researchers, in a move Professor Keady describes as “exciting”.

He said: “This will lead to the development of new research tools for use by people with dementia and their families and help to create innovative ways of working.”

As one of its four work programmes, the research team will create what they refer to as Neighbourhood Profiles.

These are more accurate estimates of geographical differences in cognitive ageing and service use, which they will generate by using existing longitudinal databases and which will inform policy, commissioning and practice.

As part of the intervention work programme, they will develop the first digitalised life story tool for deaf people (BSL users) who live with dementia.

The latest raft of research projects are being launched at a time when there are 44 million people in the world living with dementia - and by 2050 this number is expected to reach 135 million.

 

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Readers' comments (5)

  • Dementia is being talked about lots lately and how much money is going in to research, thats great. But what about those who already have been diagnosed and are in care already, why are good homes looking after them closing down so often?

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  • The money spent in dementia research prior to this announcement had been hovering around the £12m mark, compared to cancer which stands at approx. £350m. So an extremely long way to go for research.

    Dementia care in this country is actually nothing short of f*****g appalling. With very little existing and now reducing services and support, families and carers (most without any knowledge or training) are left to look after sufferers of these terrible diseases at home, often for years, as they deteriorate, their behaviour becomes more challenging and their needs increasingly complex. Then when the exhausted, unsupported families are at the end of their tether, they are faced with placing their loved one into a home where the 'residents' are herded together in understaffed, noisy, chaotic environments looked after by low paid demotivated and defeated individuals.

    There are exceptions, but this is the norm. Put money into addressing this.

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  • tinkerbell

    Anonymous | 14-Dec-2013 9:36 am

    Sadly I agree. You must be seeing what I see. This is one of the reasons I have little time for all the lip service that private providers spout about in their glossy brochures how they are going to provide quality patient care and choice.

    The private homes I visit as a community NHS nurse for older people are pretty much as you describe.

    They are packed in like sardines. As soon as the home find them a problem (becoming resistive or too vocal) myself and social services are called in to find them somewhere else to go. Even the homes that have EMI specialist nursing homes in their title cannot cope. Once they want them out they want them out ASAP. Meanwhile some of these homes are busy building extensions for more bedrooms to take more residents for which they will not be able to cope.

    However well intentioned, kind and caring the staff may be they are being asked to do the impossible with skeleton staffing levels in order to maintain profits.

    Relatives who have struggled for years to access services cannot understand why their loved one is being moved from one home to another or backwards and forwards from A&E or moved to other care homes out of area. As one relative asked me 'why does it have to be this way?'.

    This is the system as it stands at the moment and it leaves a lot to be desired.







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  • tinkerbell | 14-Dec-2013 1:49 pm

    I'm afraid that we do seem to be seeing the same things. I find myself increasingly thinking that the only difference between the old asylums and 'care' homes is the size of the building.

    I also paricularly agree with your point about this disturbing trend of moving patients on. I am completely at a loss as to why units are allowed to claim specialism in EMI care when they are clearly incapable and incompetent and should never have been given registration status in the first instance. I don't think people are aware that this goes on.

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  • Anonymous | 15-Dec-2013 10:20 pm and
    tinkerbell | 14-Dec-2013 1:49 pm are right.

    Local care homes are usually staffed by unhappy care assistants, often far from their own homes and families and working for minimum wages. The quality of nursing leadership is so weak that I'm amazed that some are registered. Specialist homes are just the same, but with more locked doors and fewer visitors from outside.

    Winterbourne View was the tip of an iceberg and prosecutions were only achieved via filmed incidents. It's the only way to investigate abuse and neglect in such closed institutions, but patient consent is often unrealistic.

    Under the previous system, homes were inspected by senior nurses with relevant experience & the power to impose changes. The new system is much feebler and may not be fit for purpose, but without better evidence, abuses and poor care will continue.

    I don't think the work of the Francis Inquiry team is complete yet. There's more to do.

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