‘I hated seeing Mum behave in ways that were so out of character’

It can be upsetting when a loved one becomes angry or agitated, but it’s important not to simply blame their dementia. So-called ‘challenging behaviour’ is not, says Linda Harman, a normal part of dementia.

Chris Roberts was diagnosed with dementia several years ago and works tirelessly as an advocate for everyone living with the disease. If anyone understands the frustration that can arise, he does. Last week Chris sent the following tweet; ‘challenging behaviour comes from those who don’t understand dementia, the result is a distressed response from people living with dementia.’

I wholeheartedly agree. My mother had vascular dementia and as her care partner, I fought against the idea that ‘challenging behaviour’ was a normal and accepted part of living with dementia. I tried to help her access all of her favourite places, people and things in order to keep her quality of life as high as it could be, despite her dementia. This was generally possible, providing she was generally well in herself, and I was vigilant about toilet visits and potential fall hazards when we were we were out. But in the months prior to her passing away there was another factor I had to take into account; her mood when I arrived at her care home.

I hated seeing my mother behave in ways I knew were alien to her pre-dementia self. I strove to act as her ambassador, to understand why she might behave in a certain way and to explain, on her behalf, to carers so that they might understand too, since she could no longer speak up for herself. For the most part, I think I did understand; she was living in residential care by this point and many aspects of it were not to her liking. I could relate to her frustration when she was dressed carelessly (she was very particular about dress) or when the sun shone and she could not get outside.

But towards the end of her life, I could no longer explain. My mother lashed out at carers, refused to be washed, to socialise and occasionally even to eat. She bashed the walls so hard and so frequently that her hands and forearms were covered in bruises. This was the same gentle soul who was once driven by caring for her family, keeping her house spotless, socialising with a large circle of friends, a happy person who loved dancing and a nice glass of wine…. As every journey with dementia is pretty much individual, I was not able to get an explanation from any professional and I still feel very sad that, despite my best efforts, my mother’s behavior was clearly a demonstration that she was becoming less and less happy.

However, my biggest concern at the time was the level of acceptance which seemed inherent in the health system; that her decline in responsiveness and well being was simply ‘normal’ for someone with dementia. I did not, and still do not accept that this is the case – and Chris Robert’s tweet confirms it.

Dementia is a disease, not a condition of aging. ‘Challenging behaviour’ is one of many negative labels that are attached too freely and too often to people who live with it. I’d like to propose that the way many people living with dementia behave is the result of the way care is imposed on them in a generic way that is defined by their condition, instead of the person centred care that is spoken of so often. Dementia is an individual disease….not everyone with dementia will wander off, not everyone with dementia will forget who their family are, not everyone with dementia will become scared of open spaces. Some will. Some won’t.

The only ‘challenging behaviour’ with regards to dementia should be that of professionals in hospitals and care homes. These professionals should be constantly challenging low standards and lack of respect for people affected by a disease, which i makes them increasingly vulnerable and less able to express their dissatisfaction. If we all question the accepted norms we can then keep elderly and disabled people fully engaged in our society, doing what they can, breathing the wonderful fresh Spring air along with the rest of us, and feeling the sun on their skin. With a little more understanding, patience and thoughtfulness, I truly believe we are all capable of bringing moments of happiness to people living with dementia and their families.