I am very grateful to Sally-Ann for writing a Foreword to my book on ‘Living well with dementia’. The other Foreword has been written by Prof John Hodges, Professor of Cognitive Neurology, NEURA Australia and Emeritus Professor of Behavioural Neurology Cambridge University. Sally-Ann offers an unique perspective regarding her father’s own dementia, especially as she is a trained nurse. Sally-Ann’s journey, I feel, shows how in its purest form a “medical model” can fail patients, and a person-centred approach might be much positive for all. Prof. Hodges and I feel deeply honoured that Sally-Ann has added her enormously valuable contributions here.
FOREWORD TO ‘LIVING WELL WITH DEMENTIA’ BY SALLY-ANN MARCIANO, PROJECT SPECIALIST, SKILLS UTILISATION PROJECT, SKILLS FOR HEALTH, BRISTOL.
I feel a tremendous honour that I have been asked to write a foreword to Shibley’s outstanding book. I am not an academic but I am a nurse, whose wonderful father died of Alzheimer’s in September 2012. Nothing during my training or nursing career could have prepared me for the challenge that came with supporting my mother in my father’s journey with dementia. I have never met Shibley in person, which makes being asked to write this even more special. What we do have in common, however, is real passion for raising profile of dementia and a hope that we can – one day –improve care for all those living with dementia.
Many people with dementia will live for many years after their diagnosis, and it should be everyone’s ambition in health and social care to ensure that those living with dementia do so as well as possible for all of the remaining years of their life. Diagnosis is just the start of the journey, and, with that, should come full care and support to allow those with dementia to live where they wish, and with their closest present every step of the way.
Sadly my father’s experience revealed a system where no one appeared to take direct responsibility for his care or support. He was, rather, classified as a “social care problem”, and as a result, he had to fund his own care. Even when he was dying, his care was classified as “basic” so that he did not even qualify for funded health care. Our only visit was once-a-year from the memory nurse, and, as his condition declined, my once intelligent, articulate father, who did not even know my name towards the end, needed total care.
Dementia of Alzheimer type destroyed his brain so badly that my father was unable to feed himself, mobilise, or verbalise his needs. He became totally dependent on my mother 24/7. As the condition advanced, my father became increasingly frail, with recurrent chest infections due to aspiration from swallowing difficulties. Each time the GP would be called out, antibiotics prescribed, and so the cycle would begin again. As a nurse, I wanted to see proactive management of my father’s condition. The system locally, however, was quite unable to provide this service. I feel that the dementia of Alzheimer type is a terminal condition, and, as such, should be treated like other similar conditions in care models. What we instead experienced was a “reactive “system of care where the default option was admission to hospital into an environment where my father would quickly decline.
Dementia awareness and training amongst staff must be better; many staff within health and social care will come into contact with people living with dementia as part of their everyday work. That is why I am so excited about Shibley’s book. It is written in a language that is easy to read, and the book will appeal to a wide readership. He has tackled many of the big topics “head on”, and put the person living with dementia and their families at the centre of his writing. You can tell it is written by someone who has observed dementia, has seen its joy, but also felt the pain.
My father was cared for at home right up until he died, mostly through the sheer determination of my mother to ensure she fulfilled his wishes. Not everyone is so fortunate, and for these individuals we really need to be their champion and advocate. Everyone should be allowed to live well with dementia for however long that may be, and, with this book, we can go some way to making this a reality for all.
Sally-Ann Marciano (@nursemaiden)
Bristol, England, United Kingdom
August 8th, 2013