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Nicci Gerrard is a well-known journalist, author and campaigner. Her book about dementia is an elegy for late father, who had dementia in the last years of his life. She has researched it thoroughly, speaking to many people living with dementia and their families as well as to a range of clinicians and dementia researchers. As well as this, she draws on literature and art.

John Gerrard developed dementia gradually so that it was impossible to say when its onset was, especially as he was somewhat absent minded to start with (though well connected with and knowledgeable about nature). His state declined rapidly following a hospital admission which for various reasons was extended to five weeks. He was discharged a shadow of the person who had been admitted. The shock of this change led his daughter to launch John’s Campaign, which advocates for family carers to have the right to be with their loved ones in hospital and not to be restricted to brief visiting hours.

The book follows the journey of dementia through its chapters, especially once the author starts to discuss the process and impact of diagnosis. Thus we move from the general business of ageing through such matters as adapting to the diagnosis, how dementia affects carers, the importance of home, hospitals and the end of life. There are many insights both from Nicci Gerrard’s own experience and from the people she speaks to. One chapter, for instance, is about the issue of shame – how people, both those with the condition and those around them, often have a period of heightened and potentially painful self-consciousness, a feeling of being at risk of being exposed. There is a lot of embarrassment in the early stage of dementia, it appears.

Nicci Gerrard takes a stance between undue pessimism about the unrelenting course of dementia on the one hand and facile acceptance of living well with dementia on the other. She describes the experiences that she meets head on. This is fairly uncompromising material and challenges the reader to think about what dementia is about and how it challenges the integrity of a person’s nature.

By the time of death, however, matters are more peaceful. Following death, there are a variety of ghosts of the departed person that one can call to mind, seeing them at different stages in their life. This ability to move about in time gives a longer perspective of the person’s life that acts to promote restitution and to put the years of dementia into context, in a way that was perhaps impossible during the heat and dust of caring for them. So what does dementia teach us about love? I think that the book maybe leaves this question open, though it addresses well what bereavement teaches us.

What Dementia Teaches Us about Love by Nicci Gerrard, published by Allen Lane, 2019.

@FrenchNicci @JohnCampaign