5 minute read - edition 1
‘Contented Dementia’ by Oliver James
“reveals how a revolutionary new way of treating dementia brings amazing benefits for patients and carers alike…” The Guardian
We discovered this book when an award-winning domiciliary care provider mentioned that every one of their carers is given a copy of it to read as part of their training. Having read it ourselves, it's our opinion that anyone dealing with someone with dementia (personally or professionally) will benefit from this insightful and immensely practical book.
Written in an easy, readable and accessible style, it describes the theory and method devised by Penny Garner, the mother-in-law of the author. Her own mother, Dorothy, had dementia in later life, and Penny's experience of trying to understand her mother's condition and find the right care for her lead her to create a charity, SPECAL (Specialised Early Care for Alzheimer’s). Her single most important observation is that the only difference between the person with dementia today and the person they used to be is a single disability - they can no longer store new information effectively.
Understanding dementia through an analogy between memory and a photograph album
The author explains how Penny Garner uses the analogy of a photograph album to represent our memory system and how it works. Each photograph in the album represents an individual memory. Those memories are automatically stored at the time that they happened, complete with both the facts and the feelings relating to them. When we are awake, we keep our album open on today’s page, the ‘here and now’. We constantly, but subconsciously refer to these most recent 'photos' in order to make sense of where we are now, what we are doing and who we are with. Occasionally we leaf back through recent pages to seek further information we might need to make sense of things. In other words we are constantly accessing our short term memory to make sense of our current situation. Using our album in this way is fundamental to our mental existence, it happens automatically and it's critical to our identity.
For healthy people, the only change in how we use our 'album' as we age relates to the speed and confidence with which we access it. But when dementia sets in, a single, striking change happens. When many of the new photos (memories) are created, only the feelings are stored in the album, but not the facts that go with them. Penny describes these fact-free photos as ‘blanks’. As the blanks increase in number, the person finds that more and more of their recent album pages have potentially crucial facts missing. It’s not that the recent factual information has been forgotten – it has simply never entered the album in the first place. The older photographs/memories that pre-date the onset of dementia generally remain complete, with their facts and the related feelings both easily accessible.
When confronted with clear evidence of a 'blank', a serious threat to emotional wellbeing arises, often leading to unbearable panic and distress. This is something Penny calls a ‘red’ photo. Most people have a few reds in their lives, associated with trauma of some sort. But they generally know what those red photos relate to, and why they feel the way they do about them. But the experience of uncovering a red ‘blank’ is particularly frightening and specific to dementia, leading to a continuous run of red blanks referred to as ‘negative ribboning’.
Using the Photo Album analogy to provide effective care
Penny suggests that to help a sufferer of dementia enjoy lifelong well-being (‘contented dementia’), carers need to remove any potential for the red-ribbon effect as soon as possible after diagnosis. In practice this is about phasing out any reliance on new facts. While some new facts can still be stored, it's imperative that they are related in some meaningful way to the secure, pre-dementia past. It also means providing support using old photos (memories) when information is required.
The book goes on to teach the highly regarded SPECAL method of delivering care, starting with three ‘commandments’ when it comes to the first goal of never challenging sufferers with new information:
- Just don’t ask questions.
- Learn from them as the experts on their disability.
- Always agree with everything they say, never interrupting them.
Clearly this is no straightforward matter and requires carers to refrain from responding with what otherwise seems like common sense. But the book clearly explains how to follow these instructions while providing effective ways of communicating and understanding.
We are then given practical guidance as to how to deliver against the second goal of ensuring that old photographs/memories are used in the most effective manner, to help those with dementia to live contentedly in the present, through the past.
This is a clear, immensely practical and illuminating book, whose whole aim is to help those living with dementia to continue to enjoy a good quality of life, in spite of their condition. It helps those who live or work with dementia sufferers to deliver the kind of care they need, in a way that is less stressful for all concerned.
The SPECAL method has been shown to:
- increase the person’s confidence and thereby slow the rate of deterioration
- reduce the need for medication
- enable the person to remain in their own home for significantly longer
- minimise the distress all too often seen during and after a transition into a different care setting
Reading through this book one cannot help but wonder how we ever got things so badly wrong in the first place? It has taken some time for the work of Penny Garner to really take hold. As long ago as 1997, the work of her charity, SPECAL, was described by the Alzheimer’s Society as ‘a very impressive demonstration of person centred care’ and two years later its effectiveness was verified and commended by a Royal College of Nursing evaluation. Today, SPECAL is an internationally admired centre of excellence, and the SPECAL method is increasingly being adopted by dementia care providers.
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This summary is not intended as a substitute for medical advice or diagnosis from a health professional. The reader should consult a health and medical practitioner in matters relating to their or others mental or physical health, especially with respect to any symptoms that may require diagnosis or attention.