Foreword There are already around 800,000 people living with dementia in the UK. With rapid population ageing, we expect this figure approximately to double over the next two decades. There is also a national “push” in the government’s Dementia Strategy to provide people with earlier and more accurate diagnosis when they begin to experience symptoms which might indicate dementia. It is often relatives and carers who notice the symptoms of dementia more than the person themselves. They can experience initial relief that someone has finally taken their concerns for their loved one on-board and has made a diagnosis. But that’s not much use if they are just “left” with the D-word and don’t know where to turn next. Although some drugs can have a modest benefit in some types of dementia, what’s more important is for the person living with dementia and those who support them to get advice and support for the future. Questions might include: • what can we expect in the future? • do we need to adapt our home or even move? • what’s the right way to support people when their memory is failing or their behaviour changes? • what if they have to come into hospital? • do we need to make any written decisions about future medical treatment? • who can we turn to for support and advice? • how can we pay for long term care if it’s needed?
The “Dementia handbook for carers” aims to answer these questions and many more with the information based around what services are available locally. There are sections on Day-to-day living, Support, Legal and money matters, an A–Z of symptoms and behaviours and a section on Record keeping and updating relevant care documents. We are very grateful for the work led by the Centre for Information Design Research at the University of Reading in preparing this handbook. The research team at the University worked closely with a group of carers for people living with dementia as part of a research project. The work resulted in a handbook co-designed by potential users (i.e. carers) in a format and style that suited their needs. By giving this handbook to those with a new diagnosis of dementia and their carers, we aim to get people off to a positive start with the information they need readily to hand. I hope it helps to make living with dementia easier and more hopeful for our local community.
Professor David Oliver BA, MB BChir, DGM, MHM, MD, Dip. Med. Ed, MSc, MA, FRCP Consultant Physician, Royal Berkshire NHS Foundation Trust Visiting Professor, City University and Surrey University Visiting Senior Fellow, the King’s Fund President-elect, British Geriatrics Society Dementia handbook for carers: Berkshire West
n
© BHFT 2014. All rights reserved
n
Version 1.0 September 2014
Acknowledgements This handbook has been prepared as a collaboration between Berkshire Healthcare and the Centre for Information Design Research, University of Reading. The research project, led by Dr Luke Solomons, was funded under the Prime Minister’s Challenge 2012 initiative by the West Berkshire CCG Confederation. We would like to thank all the carers who kindly gave their valuable time and experience to contribute to the handbook. And to thank Claire Garley from Alzheimer’s Society and Carol Brindley, Marielle Kay and Sylvia Roberts from the West Berkshire Memory Clinics for sharing their knowledge and experience. We are also grateful to the staff and volunteers from the following organisations who have taken the time to contribute so generously to the handbook’s development: Age Concern Woodley, Alzheimer’s Society Reading, Beechcroft Memory Clinic at West Berkshire Community Hospital, Hazelwood Memory Clinic at Prospect Park Hospital, Wokingham Memory Clinic at Barkham Day Hospital, the Older People’s Mental Health Liaison Team at Royal Berkshire Hospital.
Produced by: Centre for Information Design Research
Funded by: Newbury and District Clinical Commissioning Group
North and West Reading Clinical Commissioning Group
Dementia handbook for carers: Berkshire West
n
South Reading Clinical Commissioning Group
© BHFT 2014. All rights reserved
n
Wokingham Clinical Commissioning Group
Version 1.0 September 2014