As a writer of blogs, I frequently read other people’s blogs for inspiration and fresh perspectives. I came across a blog this week on the British Geriatric Society blog page called ‘The Paper Boat’ written by Patricia Cantley, a consultant physician in Midlothian.
Dr Cantley writes about the term ‘frailty’ and the difficulties health professionals have in defining and measuring a person’s ‘frailty’ in the context of care planning. This blog resonated with me. The language we use when describing people’s conditions can have a significant impact on how they feel about themselves and their psychological responses to treatments and interventions.
Dr Cantley writes, “From a patient or relative’s point of view, the word ‘frailty’ seems to be, at best, somewhat vague, and at worst, derogatory and demotivating. When we ask patients how they feel about the word, whether in large surveys or on a one to one basis, they do not like it”.
Dr Cantley shares her experience of using the analogy of ‘a fragile yet beautiful paper boat’ to help explain prognosis in the event of calm weather, or stormy weather, both of which we can expect at times. It’s a lovely piece and demonstrates how using metaphors can open up meaningful dialogue between clinicians and patients and carers.
Dementia is a difficult condition to understand. As it is so often said, everyone is different, and everyone’s dementia manifests itself in different ways. There are more than 100 types of dementia and each unique person responds to their dementia in their own unique way.
Metaphors and analogies have been used for many years to explain dementia and to describe the perplexing ways in which a person with dementia might behave or experience their world.
I remember, many years ago, a family carer telling me her take on her father’s dementia. “It’s like the layers of an onion are being peeled away. The outer layer represents his most recent memories, the next layer slightly older memories; gradually, the layers are coming away. He often thinks that I am his sister, and that my daughter is me when I was a child. His world is as if he is in his 40s, but he is 76 and his Alzheimer’s is peeling away the layers of the onion that is him”.
We might feel that this analogy is too generic to describe the complexities of dementia in all its different forms, but this way of understanding the progression of her father’s Alzheimer’s was helpful to his daughter-carer and enabled her to come to terms with the inevitability of her father’s decline whilst, at the same time, enabling her to understand the importance of enjoying the moments of the ‘here and now’.
The ‘bookcase analogy’ is widely used in dementia training and is a core element of ‘Dementia Friends’ information sessions. Originated by dementia care consultant, Dr Gemma Jones in 2005, this way of describing memory losses that people with dementia experience, and the importance of ‘emotional memory’, has proved very effective in dementia training that I have delivered. The ‘bookcase analogy’ is described beautifully in this YouTube video by Natalie Rodriguez from Alzheimer’s Society.
However, dementia isn’t only about memory. People with dementia can experience an array of symptoms.
Keith Oliver, a retired headteacher diagnosed with Alzheimer’s aged 54, uses the metaphor of ‘fog’ to describe his experience of living with Alzheimer’s. In a ‘Dementia Diaries’ podcast, recorded in 2016, Keith says, “On bad days it’s like living in a fog, on good days – and there are more good days than bad – the sun shines and life is much clearer”. In this piece, transcribed here Keith highlights a number of other metaphors that he finds useful in describing his experience of living with dementia to other people.
Agnes Houston MBE, diagnosed with early onset Alzheimer’s in 2006 at the age of 57, articulates the sensory challenges that she experiences in this video on YouTube. Because of her visual perception difficulties, Agnes explains that she has had to learn: ‘don’t trust your eyes’.
So, are metaphors and analogies helpful? Keith Oliver thinks that metaphors are useful “to give people insight into my world of living with dementia”.
My view is that metaphors and analogies do not tell the whole story, but they do enable us to piece together an understanding of what living with dementia might be like, at least, some of the time.
‘The Paper Boat’ reminds us that our journeying through life is precarious.
In her blog, Dr Cantley shares her experience of a conversation with the daughter of a very elderly man she was taking care of: “If the weather were to remain fair with barely a trace of wind, then there was no reason to think that the boat would go down and indeed it might sail on for quite a while. If, on the other hand, the wind got up, or worse, if it started to rain, that frail wee boat would go over quite quickly with little we could do to save it”.
You can follow Dr Cantley on Twitter : @trisha_the_doc
Are there any analogies or descriptions of dementia that have enabled you to better understand the lived experience of the condition and make sense of the behaviours of a person with dementia that you have observed? Please do get in touch. You can email me at firstname.lastname@example.org