Saddleworth woman contributes to book of dementia life stories
Debbie and Joyce Brown at the book launch last Friday
Reporter: Stuart Littleford
A book that captures the life stories of Oldham residents with dementia, and their carers, was launched officially with an event at Oldham Library last Friday.
“Life Story Work with People with Dementia: Ordinary lives, Extraordinary people” explores the life story approach to helping to care for people with dementia and explains how it all began in Oldham.
The life story approach involves care staff working with carers and relatives of a person with dementia to build up a knowledge and understanding of the individual’s background. This can help them to provide better, more personal care and support.
It originated in Oldham when Alice Holt, an Oldham resident, was diagnosed with dementia and her husband, Ken, wrote down Alice’s life story for care home staff, as he recognised how important it was for staff to know about her background. For example, Ken was able to tell staff of Alice’s war time fears when she would often stay dressed at night in case she had to rush to the air raid shelter. This helped staff caring for her to understand why Alice may have become agitated if they brought out her nightdress.
Ken founded the Oldham Life Story Group in 2003 and pursued his vision for a national network, leading to the launch of the national Life Story Network in 2010.
Life story work is just one technique used by staff at the Oldham Memory Service, run by Pennine Care NHS Foundation Trust with Age UK Oldham and Making Space. Polly Kaiser, Consultant Clinical Psychologist at Pennine Care, worked with Ken to establish the Life Story Network and was an editor on this book, along with Ruth Eley.
Polly explained: “The book is about gathering life story knowledge in one place for the first time. It includes contributions from many people who have been using, advocating and researching this approach for many years. It also has first-hand accounts from carers and relatives of people with dementia about how life story work helped them and those they cared for – even featuring a few tales from the Oldham and Saddleworth areas.
“We hope the book will be useful not only to health and care professionals, but to people with dementia and their carers and families.”
Debbie Abrahams MP for Oldham East and Saddleworth, and a Dementia Champion, told Sadleworth News: “I know from personal experience how important it is to preserve someone’s life story when they have dementia.
“When I cared for my mum, Angela, I used photographs to help her remember the important people and events in her life. But it also became clear that everyone caring for her, especially the professional carers, needed to know who she was and what her life story was so they could relate to her as a person and not just a patient.
“What Polly and Ken have created is an incredibly important, and informative, book to help both busy professional carers, and family carers, record and preserve the life stories of the people they are looking after. I wish I’d had access to such a brilliant idea when Mum needed it.
“I’m very proud of the work that has been developed in Oldham over the last few years by the many groups who are pooling their resources and ideas to keep us on track to becoming the most dementia-friendly town in the UK.”
Joyce Brown from Dobcross has been a member of the Saddleworth Carers Group since 2010 joining shortly after her mum, Olive, died with dementia. Olive’s story is featured in the book.
After the book launch Joyce told Saddleworth News: “I love the concept of creating a person’s life story, using the methods described in the book, and it can have such an uplifting effect on the person with dementia, their loved ones and the staff who are caring for them too.
“It’s so simple and you can create a life story using any means that you find easy. For me it was using original photographs, cutting and glueing them into a book format. For others it might be a case of being more high tech using DVDs or iPads.
“Creating a life story can also mean you preserve interesting historical facts too. In my mum’s case she told us about working in a munitions factory during the war as a young girl. The work she described so vividly was incredibly dangerous and I’m so proud that her contribution to the war effort will never be forgotten now it’s captured in her life story book forever.
“She had incredible recall and could even remember the name of her supervisor and the exact measurements of the munitions she was producing on machinery at the factory.
“Mum’s Christian faith was a very important part of her life story and she told us that the night before she went to the munitions factory for the first time she dreamt about the painting Light of the world by Holman Hunt. In the painting Jesus is outside knocking at a door with no handle. The message being Jesus is waiting for you to open the door to him.
“But Mum thought this dream meant she was going to die. Fortunately her Aunt Violet told her ‘no, this means Jesus is with you and will protect you’.
“Mum immediately felt comforted and never forgot that moment and by telling us the story we knew it was an important part of her life story.
“So, when the staff caring for her read this they knew that when Mum needed comforting just showing her the Light of the world painting would help her feel calm and safe.
“If you do know anyone with dementia, or have a loved one with dementia, I really do encourage you to buy them a copy of this book. The journey through caring for someone with dementia can be very hard but working with someone on their life story is so rewarding. And the outcome will be that you create a wonderful record of their life that will bring comfort to them, you and their wider circle of family and friends that will stay with you all long after they’re gone.”
For more information about the national life story network, visit www.lifestorynetwork.org.uk or for local information contact Polly Kaiser at polly.kaiser@nhs.net or Linda Green at thegreens35@tiscali.co.uk
For more information about Oldham Memory Service, visit www.penninecare.nhs.uk
Author: Jude Gidney - Editor
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