It can certainly be very hard to come to terms with. Hard enough for the person diagnosed of course, but in some ways, almost as bad for family carers, who must watch the deterioration of the person they love, usually over many years , without any hope of reversal. In many ways, for them, dementia is an ongoing bereavement process and loss of a loved one before death and often means massive and often exhausting changes to their own lives.
Dementia can be scary and disorientating for the person with the diagnosis. Short-term (working) memory loss; slowly disappearing awareness of basic things like eating and personal hygiene; confusion as to their whereabouts or who people are who they may have know for most of their lives; loss of life skills like reading, even vocabulary; rapid mood changes, anxiety, depression and even bouts of aggression; depleted motor skills and mobility; all these aspects of dementia can be frustrating or 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 pessimistic list – and even though dementia cannot be cured or reversed, (despite what the red-tops would have people believe) it can be managed. 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 finally 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 around 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 a total of about ten years. I noticed how her friends gradually fell away, how people were nervous to engage her in conversation or worse, were faintly condescending; I noticed how impatient my father could be with her, the woman he adored and had been with for over 60 years – and how all of us in the family felt 'at sea' with the experience.
Once Mum was in a care home, I noticed that the other residents and their families had similar issues. I saw that she was increasingly challenged to express herself. Of course, the carers knew almost nothing about her and had few, if any tools available to help them get to know her better.
I made her a life story album. Really it was one of the most important things I did specifically, if unwittingly for her. Nothing fancy you understand, just a pictorial chronology of her life with some simple captions, written autobiographically; for example, "Me in the garden dancing", "Our honeymoon in Bournemouth" that sort of thing.
We watched DVDs together that I knew would make her laugh. In the earlier days we would watch Dad's Army, but later she was unable to follow the plot lines and even Arthur Lowe didn't seem so funny any longer so we moved onto 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.
And I encouraged her to talk. What I was doing was finding out about a person I realised I hardly knew. The album prompted her to share her experiences as a girl, as a younger woman, – things I knew very little about. In getting to know about her past, I was more able to predict what she might want in the here-and-now. Her outlook, needs and expectations had their foundation in her earlier life.
I realised that through her sharing her reminiscences and through my empathy and concentrated listening, we were able to replay some of her life history, together. This comforted her and helped her to centre herself a little in the confusing, wobbly world she found herself in.
Over five further years of acute observation, pondering and listening to the lives of people living with dementia, I developed the REAL Communication Framework. REAL is an acronym for Reminiscence, Empathic engagement, Active listening and Life story, four really important aspects of the care of older people with dementia. The Framework includes simple tools to help anyone caring for a person with dementia to do it with greater awareness, value and subtlety.
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, for all concerned.