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Following on from our last post on tools for improving Dementia Diagnosis rates, Tony Robinson, a member of the Dementia Delivery Strategy Board, talks about a new early diagnosis pilot from the Alzheimer’s Society:

The Alzheimer’s Society Campaign and Media group, of which I am a member, have been one of two groups chosen nationally to undertake an eight month-long pilot project aimed at improving diagnosis rates for dementia.  It is almost certain that Warwickshire will be one chosen area for this pilot but given the close ties, on many levels, with Coventry, the likelihood is that both areas will be considered as a whole.

Current estimations of people with dementia in the two areas tell two very different stories.  Presently, Warwickshire has twice as many people diagnosed with dementia as Coventry. The estimated rate of increase for cases of dementia over the next ten years for Warwickshire is 37% compared with only 19% for Coventry.  Current levels of diagnosis are 39% for Warwickshire and 43% for Coventry.

First, we wish to obtain the support of all stakeholders, including MPs and Councillors at all levels of local government.  We also wish to consult with members of the Primary Care Trusts and Health and Wellbeing Boards.  We believe the Joint Strategic Needs Assessments (JSNA) could play a part in gathering data from this exercise.  Key to success will be discussions with GPs and Memory Clinics to find out where there are problems and look at innovative ways of solving them.

Much of the initial work will be concentrated on getting the leaflet “Worried about your Memory” to as many households as possible by whatever means we can, with magazines and newsletters, and backed by media coverage.  The Guideposts Trust has already promised to deliver around 5000 copies with their newsletter to carers.  The leaflet is also freely available in GP surgeries and we will send it to pharmacies, dentists, opticians and libraries as well.  We make no apologies for people receiving more than one copy.

We would like to visit area forums and social groups to reinforce the message.  We believe the public has a vital role to play, if they are told how to recognise possible symptoms such as short term memory loss, and to act with discretion in persuading family members, friends, etc to have a memory check.  We do not want to encourage “dementia vigilantes”, rather Good Samaritans.  Too many people have “walked by” in the past.

We want to achieve an improvement, but this may not be apparent immediately after the 8 month period.  It is essential that we follow up this work, even without the funding.  Otherwise we may create a blip followed by a decrease in diagnosis rates.  Any improvement must be maintained and built on.

All our data gathered so far has been done by trawling the internet.  Any piece of information, particularly on minority social groups, would be helpful. If you have information to share, please contact Phili Milton, co-ordinator for the project, her email is phili.milton@alzheimers.org.uk and Telephone: 01926 888899.

About Tony Robinson

Not to be confused with the Tony Robinson of Baldric-fame, though both have similar experiences of caring for someone who was living with dementia.

Tony lives in Nuneaton and took early retirement in 1999 to look after his wife, Isobel, who was suffering from depression at the time, but was later diagnosed with Alzheimer’s disease.  Isobel went into residential care in 2010 and died in July last year, which left Tony with a big void to fill.

Tony had already come to the attention of Warwickshire County Council, through his work on The Carers Partnership, amongst other things, and has also been able to devote more time to doing work for The Alzheimer’s Society.

Tony describes himself as currently playing “catch up” for the last 12 years that he spent supporting his wife and now enjoys international travel (having been to Russia and South Africa in the last year), walking, most major sports, and attending concerts at Birmingham Symphony Hall.  Equally important to Tony has been rebuilding a circle of friends.  Tony maintains that ‘when you are are involved with supporting someone with dementia, you really find out who your true friends are.

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