Dementia is so complex

Lots going on, a year of changes, a year of perplexity.

You can read any amount of literature on Dementia, what it’s like to live with it, how do you know if you have dementia, what are the signs, but there is not one source of absolute certainty showing a list of traits of dementia that everyone living with these brain diseases with have together. Not one. Each person experiences something different, each person may have one trait, but not another. So what is a typical experience of dementia? It is important to know that there isn’t a typical experience.

Thing is, we need to put symptoms, traits, diagnoses into lists, tick boxed so that we can make sense of whether this person ticks all the boxes to say they have a definitive diagnosis of this type of dementia or that. We expect the neurologists, psychologists, psychiatrists to know how to make sense of what is happening to someone to say, yes you have X type of dementia. They do their best with the knowledge that we have about the brain, which is relatively little.

Then who really understands the nature of how the brain works, or fail dramatically, or incrementally in the non academic world? Sometimes we feel that because we know someone with Dementia we are an expert in ‘knowing’. Perhaps it is because we know so little that is why we are so afraid of brain illnesses, we simply don’t understand what is going on and how to deal with it.

Remember when Cancer was a word that was spoken in hushed voices, if at all. Way back then little was know and people died horrible deaths whilst surrounded by families tortured by the process. Cancer. There are treatments that cure now, there are treatments that enable someone to continue to live far longer lives. We are not afraid to say the word or talk about it. Dying is always hard, but now deaths are easier and can be be pain free.

Dementia. Brain cells die through disease. We think we know how but not why it happens, what starts it? Why some people and not others? Auntie Lizzie used to wander, but Iris never did. What was the difference in the two people? Auntie Lizzie born in the late 1800’s died in the early 60’s and had no real diagnosis.. Iris born in the 1930’s had vascular dementia and so it affected different parts of her brain and different functions. Auntie Lizzie talked all sorts of nonsense, but Iris lost the ability to speak. She was unable to tell those around her that she understood what people were saying about her, whereas Auntie Lizzie had little comprehension any more. Iris was bedridden with the loss of mobility, Auntie Lizzie used the wander the streets in her nightie. Jack feeds seagulls and paints the most beautiful pictures, he goes to the pub on a Friday night on his own and meets his mates. His behaviour can be inappropriate because he is unaware that you shouldn’t say some things out loud, or approach people/children you don’t know and interact if you’ve known them all your life. His short term memory is non existent, and repeats himself over and over. He has interesting stories of working down the coal pits, and as a welder on the oil rigs. He is mid 50’s. Sally lives with her husband and her two boys. She is late 40’s. She doesn’t handle money anymore because she doesn’t understand coins and counting. She saw some long lost friends across the cafe and catches up with them like anyone would but then looks at the tea pot and the cup not sure what she is supposed to do and struggles with the order of how to pour a cup of tea. She talks about holidays, politics, social activities happening in the town. We laugh at how we can never remember each others names.

Then there is the marvellous Wendy Mitchell – Which Me Am I Today (blog) who has written a book – Somebody I Used To Know . Wendy travels around the country talking about her life and educating how to live well with dementia. How can she do that if she had dementia, some would say.

When you look at people living with Dementia it is easy to see how nobody appears to be the same – until the final stages of their life. That’s it, that’s the reality of how people see dementia mostly. The final stages. ‘Oh my mother had dementia and it was awful, she never knew any of us, and just sat’. ‘My father/husband got angry all the time for he had to go into a home, then he died’. ‘She kept accusing me of stealing from her’. ‘I lost my wife before she died, she slowly disappeared before my eyes’.

So you think you know what Dementia is because you know/knew/lived with someone who has/had it. This is one person with one type out of the 150 so types of dementia, showing one or more out of a whole host of symptoms that may not be present in anyone else. The combinations are endless. Just as individuals have different personalities, so do dementias.

What I will say though is, becoming a Dementia Friends and Champion is something that all people should do, because even if it doesn’t explain all the dementias it does give an insight into how living with it can be. Knowledge is the best form of action towards becoming prepared for the future, and inclusive in their own community.

Seven years on and my dementia is….what. I don’t know. Any different? A little. Progressed much? not sure, a little. People are questioning me; are you sure you have Alzheimer’s? Do I have brain damage which is causing symptoms of dementia? How does that make me feel? Confused…totally and utterly confused. New brain scans to come and then what………….