‘To Know Me’ was inspired by my mum who, 6 years ago, was diagnosed with Dementia. When I noticed that she was struggling to communicate her needs and to make informed choices, I decided I wanted to find a simple way to express more about the mum I know, being determined that the Dementia should not define her.
My mum was an extremely proud lady with many friends and a thriving social life. A teacher of children with additional needs, she loved to sing and was a loving wife, mother and grandmother. I created the books, because I wanted all those involved in her care, to know all these things about her and much more. My hope being that use of the book would help to improve my mum’s quality of life and potentially that of many more people living with Dementia.
The books I have created are beautiful, hard-backed photo and text books created through online software downloaded direct from the websitewww.toknowme.org, which are now available to everyone and which I hope can be of help to others living with Dementia and other conditions which affect communication, like my mum.
To Know Me is made up of a mini-biography and a personalized care guide, which is compiled by the person living with Dementia together with their families or by families on behalf of their loved one. Photographs and text are inserted onto the attractive pages to reflect the life, spirit and preferences of the person for whom the book is intended. The completed book then provides a valuable and dignified companion for people living with Dementia and an important practical resource for all those involved in their care.
The first part of the book, the mini-biography, identifies areas of the person’s life which have been important to them, the page titles include My Family, My Working Life, My Comedy Moments, My Favourite Things, School Days, Travel and Hobbies and Interests. The second part is composed of tips and <image001.jpg>words of advice on ways to ensure the care experience, of the person living with Dementia, both meets their needs and acknowledges their preferences. For example that, if offered a hot drink the person prefers tea, with sugar and milk, or that they love the occasional Big Mac as a special treat!
I know that, as a daughter, I found the process of completing my mum’s book gave me a sense of purpose and usefulness, I laughed and cried in equal measure when choosing
the photos and words which encapsulated my mum’s life. I did, however, also find it gave me an opportunity to remember happier times and gave me a sense of contributing in some small way to my mum’s care.
The unique feature of the book is in its simplicity and holistic approach. It ventures beyond life story work by also offering a personal, practical insight into the best ways to ensure that the individual experiences the highest quality of person-centred care and support, according to their needs, and in a simple, portable and non-clinical format, which can accompany the person to any care setting, and of which they can be very proud.
Use of the books can help ensure our loved ones experience truly person-centred in a variety of care settings:
- In Care Homes, for both long term and respite care, the books are simple way for care home staff to learn more about the social and emotional needs of their residents, for example in considering their preferences, desires and values and in arranging activities which acknowledge their interests. Carers have said they have also found the books useful as a conversation tool and in helping to calm and distract residents where necessary.
- For Home Carers, the book allows for visiting carers to quickly identify their client’s care needs allowing time for important social interaction and conversation, made easier through the photos and text contained in their book.
- In Hospital: In a busy hospital ward, where the person living with Dementia is in an unfamiliar setting, medical staff can use the books to quickly discover more about the person behind the condition, inspiring conversation, finding out about their desires and preferences and helping to alleviate any unnecessary anxiety they may experience.
- In Doctor’s Surgeries: Doctors can use the books as a way of quickly gaining an understanding of their patients and predicting any potential difficulties with anxiety or communication.
I hope the books will be able to give more of a ‘voice’ to those who can no longer clearly express themselves.
*The opinions expressed are the bloggers own and do not necessarily reflect the views of the World Health Innovation Summit.