Dementia from the Inside: A Doctor’s Personal Journey of Hope

Dementia from the Inside: A Doctor’s Personal Journey of Hope
John Ling John was born and initially schooled in Cambridge, but most of his secondary education was at Reading School. From 1966 to 1976, he studied at Leeds, Pennsylvania State and Nottingham Universities.
27 March, 2020 2 min read

Are you likely to suffer from dementia? Good question. The unwelcome answer is ‘possibly’.

The number of people with dementia in England and Wales is expected to rise to one million by 2021 and to two million by 2050. In 2018, dementia and its most common form, Alzheimer’s disease, continued as the leading cause of death in England and Wales, with almost one in eight people dying from the condition.

It has been called the biggest health crisis of our time. We all know sufferers — my father included. The dread disease, for which there is no cure, is associated with slowly ‘losing’ loved ones as their competence and communication skills inevitably dwindle.

But along comes Jennifer Bute, who, in 2009 at the age of 63, was diagnosed with young-onset dementia and thought it was the end of her world. As a GP, she had to retire early. Now, counter-intuitively, she writes in the preface of this book: ‘My dementia has greatly deepened my relationship with God; having dementia has enriched my life’ (p.2).

Throughout the pages of this short and easy-to-read book, the author provides helpful information and advice about finding that real person despite the individual’s dementia. Readers will learn about ‘time travelling’, books of memories, what questions to ask (and not to ask), the importance of music, the role of churches, ‘meltdown behaviour’, and a host of other signals and coping strategies.

Despite these positives, there are negatives. Much of the book is peppered with anecdotes which many will find fascinating, but I found them slightly annoying. More seriously, there are ‘coincidences’ and ‘miracles’ that are technically not miracles, and dubious assertions like, ‘I felt God telling us’ and ‘God sent an angel to rescue me’.

Nevertheless, Jennifer Bute can still valiantly conclude, ‘All my experience and knowledge tell me that when someone has dementia, the real person is still there, even if trapped within a body and a condition that makes it hard for them to communicate. It gives me great joy to ‘find’ those who are further along the path than I am’ (p.76). And the challenges of this book remain: is my church dementia inclusive, and am I dementia friendly?

John R. Ling

Aberystwyth

John was born and initially schooled in Cambridge, but most of his secondary education was at Reading School. From 1966 to 1976, he studied at Leeds, Pennsylvania State and Nottingham Universities.
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