Daughter of mum with dementia set up 'To Know Me' books to give her mum a voice

Five years ago, Louise Arkley’s mum was diagnosed with dementia. Desperate for her care workers to know her as the person she once was, her daughter launched ‘To Know Me’ books.

“It was during one particular visit to the care home that I noticed she was beginning to struggle to remember people, communicate her needs and make informed choices. I wanted to find a way of letting people know more about her; to find a simple way to express more about the mum I know, ever conscious that the Dementia should not define her,” reveals Ms Arkley.

“My mum has always been an extremely proud lady with many friends and a thriving social life. A teacher of children with additional needs, she loved and still loves to sing and has been a wonderful wife, mother and grandmother. I wanted the carers involved in her day to day care, to know these things about her, so I made her a very simple, beautiful book which encapsulated her life story; her social and emotional needs and her choices and preferences.

“Mum loved it and the feedback from it was so good, that I decided to make it available to other people living with Dementia and their families. My philosophy is simple: 'If we know more about the person behind the condition, we can care more effectively and sensitively to their needs'.”

The ‘To Know Me’ books, are hard-backed photo and text books which include a mini-biography and a personalised care guide.

They are created through online software downloaded direct from the website www.toknowme.org. Blank books are also available to purchase direct from the website for people who would prefer to complete their books manually.

The unique feature of the books is in their simplicity, according to Ms Arkley. Through the books, everyone from medical professionals to care practitioners, seeking to improve the quality of life for people with dementia, can quickly learn more about the individual in their care, she says.

Ms Arkley believes that the books offer the opportunity to highlight the social and emotional needs of the person with dementia and says they are intended as a valuable addition to care plans in care homes or in home care settings.

They are also intended to travel with the person as a valuable and dignified companion, particularly if they need to go into an unfamiliar setting such as hospital or respite care, where staff can quickly find out more about them which will help in personalising care.

“The care workers in mum’s care home have said that they use the book to chat with her and help to distract her when she becomes anxious; they have also expressed an interest in her life, particularly the fact that she was a teacher of students with additional needs and that she can speak French.

“The knowledge they gain from my mum’s book has directly impacted on the relationship they are able to establish with her. Through simply speaking a little French to her each day (however basic) or talking about aspects of her life which have been important to her, they have been able to stimulate her interest and help to make her feel more at ease.

“My own mum loves her book, it makes her smile more and has inspired a level of conversation and reminiscence with her that has sometimes been difficult to achieve in the past.”

For more information go to www.toknowme.org