As a dementia professional and reader of Christine Bryden's other publications where she shares her thoughts on living with dementia, I was keen to read Nothing About Us Without Us! and was not disappointed. For 20 years since receiving a dementia diagnosis, Christine Bryden has been working hard to ensure that people with dementia are included in dementia-related discussions and indeed she is now viewed as one of the world's best known dementia advocates. One of her aims for the publication is to reach many more people with dementia, their families and care workers. Readers are also challenged to consider their personal preconceptions about the disease.
Nothing About Us Without Us! brings together an edited selection of the many talks Christine Bryden has given since 1995, the year she learnt she had dementia. Often when people are diagnosed with the disease they and their family members can be overcome with feelings of hopelessness and a fear for the future. Christine was no different and talks about nearly three years of ‘despair, depression and some really bleak times’ but with support managed ‘to find hope and a sense of meaning in the dark turmoil’. She also found the will and courage to speak out about the disease and to challenge the stereotypes associated with it. Her talks therefore provide us with a very honest and powerful insight into what living with the disease is like for Christine and the frustrations and challenges she faces. However, her forthright approach, positive nature and belief that it is possible to live well with dementia, shine through and ensure that the book is overwhelmingly inspiring.
That being said, this might in itself make it a difficult read for some. If an individual's personal experiences are very different, they may struggle with some of the content. They may also tussle with the notion that a person with dementia has been able to articulate their thoughts so powerfully – something that may be difficult for them to relate to.
As the book comprises short sections of speeches, it is a simple but engaging read which can be picked up and put down intermittently. Chapters include: ‘Dementia Diagnosis – Pointing the Bone’, ‘Diagnosis, Drugs and Determination’, ‘Stigma and Fear’, ‘Coming Out of the Shadow’, ‘Mind Your Language – Getting it Right’, ‘Dementia – an Interesting Ride! Who Was I? Who Am I Now? Who Will I Be When I Die?’ and ‘Pastoral Care of People with Dementia’.
The speeches are also peppered with highly useful advice which, if followed, could make a significant difference to the quality of life of people living with dementia.
