Dementia from the Inside
A compelling account from a doctor and Baptist minister's daughter diagnosed with early onset dementia
Dementia from the Inside - a doctor's personal journey of hope
By Dr Jennifer Bute and Louise Morse
Reviewed by Martin M’Caw
Dementia is no respecter of persons – indeed, it’s now said to be the biggest cause of death in the UK. Described as a neurological condition by the DSMV (Diagnostics and Statistical Manual), the psychiatrists’ handbook, dementia is the umbrella term for the symptoms caused when brain cells are damaged. The most common cause is Alzheimer’s disease, followed by Vascular Dementia, but there are many others such as Korsakoff’s syndrome Pick’s disease and Lewy Body Dementia. Symptoms include memory loss, difficulties with thinking, problem-solving or language.
Dr Bute is a daughter of the late Revd Leslie M’Caw, a former Baptist minister and Principal of All Nations Bible College in the early 1960s. She trained as a doctor, served as a medical missionary in Africa, then worked as a senior GP in Southampton until dementia invaded her mind. Her self-diagnosis was that dementia was setting, but after initially being told there was nothing wrong, it took five years of heartache before the neurologists finally confirmed dementia in 2009.
As you would expect from a doctor, she took notes of her progress and linked the clinical outcomes with the methodical measures she took to counter the symptoms in order to develop her coping skills to maintain an acceptable life-style. These are graphically covered in the personal stories she relates.
There are two key chapters on the practicalities when dealing with dementia. Chapter 5 covers ‘key principles for understanding people with dementia’. It isn’t just a case of sitting quietly in a chair nursing your dementia. Dr. Bute identifies seven situations that can create a meltdown, from something as simple as not being able to find your place in church after receiving communion, to coping with complicated tasks, being in unfamiliar surroundings, and having to change trains and find another route. She writes ‘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.’ The importance of dealing calmly and lovingly cannot be overstressed.
Chapter six carries the very positive title ‘Don’t disable – enable’, and includes some very telling reminiscences of seeking to reach the person trapped on the inside. The fundamental principle being that ‘it is love and relationship that count.’ The key factor is how one deals with situations such as when Dr. Bute was wearing her dress inside out, or wondering how to eat a banana. Coping skills also require the reinforcement of positive faith in the love of God, and the role of faith is a fundamental reality in her experience.
Dementia from the Inside is an enthralling account of diagnosis and coping that easily draws the reader into Dr. Bute’s unfolding life-story. The seven pages of endorsements by doctors, theologians and pastors speak volumes about the relevance of her experience and analysis, and need to be read as a lead-in to what Dr. Bute has to say. Her anecdotes, linked to what to do for the best, are illustrated by very positive incidents and most importantly, what not to do, illustrated by some nightmarish anecdotes.
Read it as a compelling autobiography, and use it to develop coping skills for yourself and others. It’s a must read.
The Revd Dr Martin M’Caw (Retired Baptist Minister. Wing Chaplain No.2 Welsh Wing RAF cadets.)