REVIEWED BY KEITH JONES
Nicci Gerrard (Penguin: 2019)
Nicci Gerrard is a crime novelist and journalist, who has been visiting institutions across the UK in which sufferers from dementia are living and dying. Having watched her own father suffer from this sickness, she is strongly engaged with the plight of these people. So this book is partly her observation of people confronting this threatening condition, but also a personal reflection on it, leading her to offer views on the natureof our humanity.
Dementia robs us of ourselves, all that gives us a sense of being a person. It is therefore a form of death, in which the indicators listed by the philosopher Peter Singer are those we lose: ‘self-awareness, self-control, a sense of the future, a sense of the past, the capacity to relate.’ We lose even the ability to love, which for carers is often the bitterest part of their plight. And yet she says that her father ‘in some mysterious way’ remained himself. He was ‘like a man’.
Some of the most moving parts of the book are descriptions of people maintaining activities and interests and ambitions until far into the illness: the artist William Untermohlen, for example, gaining courage by painting.
But besides the narratives of consolation are unblinking description of the meaningless existence, and the desolation of the carers who watch their loved ones disappear before their eyes while they play the part of those who still live in a world of meaning. The vivid and truthful accounts of people under stress, the heart ¡of the book is the description she gives of John's Campaign, to enable carers to be seen as welcome to hospital wards: an access valuable both to the sufferers and also to the carers themselves. As all of us fear dementia, so these pages give us the courage to face what seems like the worst with truth and honesty. There is also practical advice on how to prepare for the ordeal.
She is herself an avowed humanist, and conducts humanist funeral rites, so she has no religious views to offer. She does not even wander into that vaguely numinous haze which people often designate as ‘spiritual’. She wants to describe the experience in this-worldly terms, with compassion and empathy for victims, carers and associates alike. This is a shortcoming, as dementia often causes people to ask profound questions about human identity and what in religious terms is called the soul. Like the hymns which were sung at her own father's funeral, religious musings are hard to keep out.
Nicci Gerrard's own conclusions about the matter aside, the book would have been richer for acknowledging how various belief systems condition the way people cope with the death of personality at the end of life. This is otherwise a warm and vivid book about a bleak subject, steering us between bogus confidence and existential despair.