“A diagnosis of dementia for a person is also a diagnosis for the whole family.”
It can certainly be very hard to come to terms with. Hard enough for the person diagnosed of course, but hard for family carers too, who must watch the deterioration of the person they love, usually over many years, without any hope of reversal and must also adjust their own behaviours accordingly. In many ways, dementia is a slow, ongoing bereavement process, of loss of a loved one before the person’s death and often means massive and often exhausting changes to the carers’ own lives.
Dementia can be scary and disorientating for the person with the diagnosis, including short-term (working) memory loss; gradual loss of awareness of basic things like eating, drinking and personal hygiene; confusion as to their whereabouts or who people are — who they may have know for much of their lives; loss of life skills like reading, language and vocabulary; rapid mood changes, anxiety, depression; depleted motor skills and mobility, to name but a few.
All these aspects of dementia can be frightening, frustrating and mystifying for the person and saddening (and sometimes maddening) for relatives. And just when things seem to have settled into a more steady pattern, the person’s condition may decline further and the care goal posts move yet again.
Despite this long and pessimistic list — and even though dementia cannot be cured or reversed, our own behaviour can make a big positive difference.
A person can live well with dementia for a long time and with changing attitudes in dementia care, the experience does not have to be irretrievably negative
Happily, in recent years, good communication is slowly being recognised as one of the most important and essential ways of helping the person with dementia and their family to deal with the condition.
I developed the REAL Communication Framework in 2003 as a response to my own observations, worries and concerns about my mum’s condition and her care. She had vascular dementia and Alzheimer’s disease for about ten years. I had noticed how her friends gradually fell away, how people were nervous to engage her in conversation or worse. I had noticed how impatient my father could be with her sometimes, the woman he adored and had lived with happily for over 60 years — and how all of us in the family felt ‘at sea’ with the experience.
Dad wasn’t coping and Mum found herself in a care home. I noticed that the other residents and their families had some similar issues to our own. I saw that she was increasingly challenged to express herself. Of course, the carers knew almost nothing about her and had almost no tools to help them get to know her better.
First off, I made her a life story album to help the carers (and me, as it turned out) to get to know her a better and to give her opportunities to be the expert, in remembering and talking about her life. Unexpectedly, it became the most important item in her life. Nothing fancy you understand, just a pictorial chronology of her life with some simple autobiographical captions; for example, “Me in the garden dancing”, “Our honeymoon in Bournemouth”, that sort of thing. We looked at and enjoyed the family photos continually over the seven years she lived in a care home.
I was on a voyage of discovery and she was sharing her experiences as a girl and as a younger woman, — memories I knew very little about, a person who seemed so familiar, yet I hardly knew.
In finding out about her youthful years, we bonded more deeply. This growing closeness helped me to understand better what she might want in the here-and-now. Like all of us, her outlook, needs and expectations had their foundations in her earlier life.
We watched DVDs together that I knew would make her laugh. In the earlier days we might watch episodes of one of her favourite comedy TV programmes, Dad’s Army. Later, she couldn’t follow the plot lines and even Arthur Lowe’s pomposity didn’t seem so funny any longer. So we moved on to The Marx Brothers. Nothing like a bit of slapstick for some instant shared hilarity. Her favourites were A Night at the Opera and Duck Soup.
On warm days, we might sit in the care home garden in the sunshine and talk about the birds, trees and flowers and remember her tending the garden at home (mostly endless weeding) and chuckle about Dad in what was his favourite haunt, wearing nearly threadbare gardening clothes.
And while she still could, we talked. About growing up and then bringing up four children, about the hard labour of housework, about life during wartime and dad’s ‘courting’. I admired her endless capable creativity in the house and her delicious cooking. Through sharing her reminiscences and with some empathic, concentrated listening from me, over time, she seemed to be more settled in the confusing, wobbly world she found herself in — and the long list of negatives seemed just a tiny bit shorter.
When REAL things are in place, anyone can have an easier and more meaningful relationship with a person with dementia and help make it an experience that can be borne more lightly by all.