Offering a lifeline for people affected by memory problems and dementia
Dementia care experts from the University of Sheffield are hoping to tackle low dementia diagnosis rates in the city with a pioneering Information Pack which offers unprecedented advice and guidance for people with memory problems.
The Sheffield Dementia Information Pack, launched today (11 September 2012), is a single source directory. It aims to enhance public awareness of dementia, signpost support and advice services in Sheffield for those affected and their families, and convey positive messages about how to live well with dementia.
A need for the Information Pack was highlighted by Professor Alistair Burns, National Clinical Director for Dementia at the Department of Health, after the National Dementia Strategy for England reported that only a third of people with the disease received a formal diagnosis.
The pack, established by Lecturer David Reid, from the University's School of Nursing and Midwifery, Professor Tony Warnes from Sheffield Institute for Studies on Ageing and medical student Lori Low, is the culmination of nine months collaborative work with local statutory and voluntary organisations. It was funded by the Marjorie Coote Old People's Fund, the Sheffield Town Trust, Sheffield Church Burgesses Trust and the University of Sheffield.
The main objectives of the pack are: to describe in clear language the kinds of memory problems which are associated with dementia and explain what dementia is and what to do if you are worried about your memory; to convey a positive message about the possibilities for continued wellbeing whilst living with dementia; to describe the assessment, support and advice services available to people with memory loss and their families and signpost the principal services in Sheffield.
Lead author David Reid said: "The Sheffield Dementia Information Pack is not the answer to the problem of under-diagnosis of dementia, but we hope it will encourage more people in the city to seek advice and support. The Pack targets two groups of people: those with memory problems who don't know where to turn or what to do; and people who have a diagnosis of dementia and want to know more about how they can live well with dementia. The Pack will also be useful to the families of these two groups of people.
"The Pack explicitly advises people to make contact with supportive organisations and not to remain alone.
"Supporting people affected by memory problems and dementia is everybody's business. It is a joint effort and requires those involved in providing these forms of support to improve their own communication practices, to help join things up for those whose lives are radically changed by dementia. We hope the development of the Sheffield Dementia Information Pack proves a useful addition to and signposting resource for Sheffield's dementia community."
The Sheffield Dementia Information Pack is now available free of charge and can be downloaded from www.sheffield.ac.uk/snm/dementiapack . A limited number of printed copies are also available. The Pack will be updated every six months to reflect the rapidly changing landscape of dementia care provision in Sheffield.
Professor Alistair Burns attended the Information Pack launch at The University of Sheffield today. He said: "Information about dementia and locally available health and social care resource is so important for people with dementia and their carers. It empowers people to make informed decisions about what help they can access, it puts individuals in touch with the right care and it can be of real practical help immediately after a diagnosis, for many a time of change and uncertainty.
"The pack is superbly written in an accessible style. I was overwhelmed by the range and quantity of services described. It will serve as an invaluable resource for the people of Sheffield and as a template for others to follow.
"The pack, compiled with contributions from Sheffield's dementia care organisations, provides valuable information about memory problems and dementia, endorses and supports the important ideal of living well with dementia and presents detailed information about treatment, support and advice services."
Kevin Roden from Sheffield said the Information Pack will be a real lifeline to people affected by dementia. His mother was diagnosed with dementia four years ago and is pictured in the pack.
He said: "I think the families of people diagnosed with dementia are really going to benefit from the pack. When this happens you simply don't know where to turn or where to go. Professionals such as GP's obviously help but they do not see your family members at their worst, such as in the middle of the night or on a really bad day.
"What the pack does immediately is to let you know that you are not alone and that other people are going through the same thing. It lets my mum know that she isn't alone and that there are people out there who can help. If I had received this pack four years ago when my mum was diagnosed I know it would have been a massive help."
Professor Anne Peat, Dean of the School of Nursing and Midwifery said: "A significant amount of work has gone into production of the pack to make sure it meets the needs of the people in Sheffield. It is an excellent source of advice and provides answers to common questions often asked by families and those with dementia. Those suffering from dementia who have looked at the pack say it is very useful and easy to understand, they like having all the contact numbers in one place instead of having to ring around."
The University of Sheffield's School of Nursing and Midwifery
Nursing and Midwifery
The University of Sheffield
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