We now know there are more people living with dementia. Many of us have been touched by dementia in our own lives. But most people still don’t understand dementia. And if they see or interact with someone who’s communication is slightly inappropriate or who’s language is somewhat different they are still most likely to judge them as weird, selfish or rude. Dementia can masquerade, can disguise itself as eccentricity, fatigue, old-age; it is a hidden disability. The cognitive and communication difficulties aren’t like a broken leg or a bright red rash. You can’t see them. They are abstract and often intangible and thus difficult to understand.
As a health professional working with people with dementia and their families it can be difficult to support the people we are working with. We may have never been experienced the disease in our loved ones. And if we have, it is difficult to share these experiences when we are taking the role of speech and language therapist, nurse or medic. Yet people search for shared experience and understanding. Meeting other people through support groups can be extremely helpful. But there are very few written accounts of what this is like. This is why I feel the book My Mad Dad is so valuable. This sensitive, heart breaking and hilarious description of living with dementia is a first hand account written by Robyn Hollingworth about living with her father’s progressive illness and her mothers more sudden death. Robyn has published her story based on the diary she kept (age 25) after moving, from London to Pontypool in regional Wales, to help her parents. The account starts just a few months before her mothers death, when her father has been living with diagnosed dementia for around four years (in his early 60s). It describes Robyn’s initial adjustment from London life (Camden in the naughties) to coping with her father. Her mother is diagnosed with a terminal cancer not long after her return home. The disease progresses quickly and her mother passes away, leaving Robyn and her older brother to care for their father and one another. Their father’s dementia quickly becomes significantly worse, and he is admitted to a living facility. Robyn compares the deterioration in his health to a broken heart. Throughout the book Robyn intertwines real life events, with examples of detailed conversations between family members, her inner reflections and the narrative of her emotional turmoil.
This book resonated with me as a speech and language therapist, a researcher and a person. Not least that Robyn is exactly the same age as me, and lived in London and around the same time in the same area and my Dad sounds surprisingly similar in personality. But that so much of this book is about communication, what it means, how it is perceived, the value and the complexity. I had a moment where I wanted to do a thematic analysis on the book to extract all these themes properly and scientifically to emphasise this point.
Before I get carried away with a thematic analysis I just wanted to pick out a few bits from the book to really demonstrate the focus on communication and how Robyn eloquently describes the impact:
Robyn uses analogies to give an insight to living with dementia. Speech and language therapists also often find metaphors and analogies useful in discussion with people and their family members. These examples are so helpful in allowing the reader to empathise with the lived experience:
“I heard an analogy the other day; it was on the telly, I think, and a spokesperson compared the early stages of Alzheimer’s disease to a radio that tuned in and out, sometimes working, sometimes very clear and sometimes just fuzzy, completely impossible to decipher or understand.”
“I sometimes think how it’s a little bit like Dad has been hypnotised- he looks exactly as he did, but really the person you knew has gone.”
Breaking down the wall of misunderstanding around communication and mental health is so difficult. These barriers impact on daily life, and Robyn highlights both the resulting frustration and anger that can go with this:
“He doesn’t really have much to say, but just talks random shit to strangers, It can get embarrassing. Mum gets upset because people don’t instantly realise there is something wrong with him. You can’t instantly recognise that Dad has a problem because you can’t see mental illness. When you couple this with the negative stigma that most of society attached to mental illness, I can see where her problem lies, and I share her concerns.”
“If someone tuts at him for standing in their way at the supermarket, I stare them right in the face, with my hand on my hip and my head on a tilt, and say, ‘I’m sorry, can I help you with something?’ How dare anyone hold anger towards someone who is unable to control their actions?”
One can’t expect people with dementia to recall conversational content, or to obey the usual conversational rules. These rules have been set by our society. But people with dementia don’t use, know or realise all of these rules. The rules are ‘held’ by the listener. When speech and language therapists work on communication we often expect people around the person with the communication difficulty to be able to change their own behaviour just like that. Changing ones own behaviour to accommodate changes in conversation is tricky, fatiguing and confronting at times:
“‘Where’s Mum, love? Has she gone to work already?’
‘What?’ I replied, in disbelief that last night’s chat was stolen from his mind and replaced with a great gaping hole of knowledge.
‘Where is Mum today? Is she is work?’ he repeated.
‘No Dad, she’s in hospital, remember.’
I really need to stop using that last word.”
“‘Its your birthday today, Dad, remember?’
I hated the way I had started to tag ‘remember’ onto the end of every statement, when talking to Dad- he obviously didn’t and wasn’t going to. This was my problem, not his.”
Being truthful or honest is another complex area. I have worked with people for whom constant re-orientation to the here and now may be incredibly distressing for all involved. And have little therapeutic value. It is not unusual that we recommend people validate the feelings, and interaction rather than constantly correcting the person. This can be an ethical challenge for many. I have attended numerous discussions with family and staff members where ethics and honesty have been debated in favour of meaning, quality of life and conversation. Robyn describes moving toward this. I am rather glad she addresses this. Often in a humorous way, other times factually. Not shying away from the reality:
“At one point he told me she had been away from a work trip and that the company expected too much of her. I agreed with him.”
“Gareth drove us home with Dad next t him in the front and me and Mum, in her urn, in the back.
‘What you got there then, love?’ Dad asked. we had agreed best not to tell him and to keep the urn in its box, out of sight.
‘It’s, uh, just…uh,um,shall we go home via the lakes on top of the mountain?’
Distraction tactics – it’s not really lying, right?”
In summary I believe this book is going to be important in contributing to people’s understanding of the impact of dementia. In particular Robyn’s descriptions of hidden disability and the frustration that goes with communicating in daily activities will make a hidden disability more visible. I also hope that themes around communication and the dilemmas of identifying how to have a conversation with a loved one with dementia will be useful for readers, speech and language therapists and people with someone with dementia in their lives.
Thus it is also good to know that Robyn’s book has been reviewed by lots of accessible mainstream media: