”There is a completely new language in this country that I don’t understand any more,” says Mary, my current client, while reading the daily newspaper in her house in London.
Yes, it is part of our daily routine to discuss certain words that make no sense to her, even though she has seen a lot of the world in her 94 years of life. I do not blame her. Words such as “internet troll”, “hacker”, “ID thief” or, more funnily, “threesome” need to be explained to allow her to understand the article she is reading.
“The name of the condition itself does not mean anything when it comes to understanding the individual”
It is up to me always to consider her age, viewpoint and mental condition when I explain words like “sadomasochist”. But once she asks for help, I must respond.
Who says dementia care is boring? It certainly is not from my perspective.
I am constantly amazed by the fact that, with a number of years of this type of care-work now behind me, I have never had two days the same. Mary has dementia, as have all my former clients, but the name of the condition itself does not mean anything when it comes to understanding the individual; we carers could redefine the term with every single person we care for.
“They are all lovely individuals with unique personal life-histories”
Mary`s dementia is one hundred per cent different from Ivy`s, Susanne`s or Caroline`s. They are all lovely individuals with unique personal life-histories and fragments of memories in their heads that make them loveable and interesting and render each care experience different. ‘Person-centred’ - that’s the word. Or it should be.
It is in the nature of my profession to work with other carers with complementary skills while trying to do my best to make each client with dementia`s life as complete as possible. For instance, when a client is considered to need a high level of care, it is quite common to have my live-in help supplemented by hourly carers coming twice or more often each day – depending on the care plan – to assist me.
”Without knowing the person for whom they are providing care, they just automatically start speaking loudly and extremely slowly”
This has given me countless opportunities to witness new carers coming to the house for the first time; some show great empathy, but others assume the elderly person in the bed, living with dementia, must be totally “cuckoo” and therefore approach them in the most patronising way.
Without knowing the person for whom they are providing care, they just automatically start speaking loudly and extremely slowly, or - in the worst scenario - make an entrance saying something like: “Hello, Darling, I am XY. We are going to check that botty now.”
Actually, I am wrong – the worst part of situations like this is to see the new carer`s face at this moment: the clear satisfaction, believing he or she has said something really good. We can call it a useful reality check when the client, not too keen on being patronised, reacts by saying “Go away” or, if less inhibited, “B*gger off”.
“The difference between a “good patient” and a “bad patient” depends on our own attitude”
Starting on the wrong foot when meeting these amazing people for the first time can change everything in seconds. Instead of co-operation, kindness, smiles and calmness, we find ourselves suddenly facing agitation, confusion, aggression and rejection. Stress levels rise in and out of the bed, yet it is only because of the unfortunate choice of a few words and some wrong assumptions.
This means such negative reactions are totally avoidable.
In my opinion, the difference between a “good patient” and a “bad patient” depends on our own attitude towards people with dementia. Keeping this in mind, together with the recognition that every individual is different, is a good basis for interacting successfully with people with dementia. Of course, it takes a few more ingredients to make such interactions into a lovely, memorable relationship - these include resilience, a sense of humour, patience, being observant and using common sense - but ultimately we, as carers, hold the key to every day being healthy, happy and balanced for those living with dementia.
Once they are happy, we will be too. So why not put assumptions and generalisations aside and start to connect with the individuals.
Agnes B. Juhasz is a full-time carer looking after people with dementia. Her new book, The Dementia Whisperer: Scenes from the frontline of caring (published by Hammersmith Health Books: http://bit.ly/HammersmithHealth) is launched on 15 November.