September is World Alzheimer’s Month, and today we’re honoring it by looking at the concept of identity and what this means to people living with a Dementia.
Developmental psychologist, Erik Erikson describes personal identity as ‘the characteristics that establish who people are and where they are going.’ When an individual is diagnosed with a Dementia, they find their path in life disrupted. Where are they going now? What will they do?
Christine Bryden is one such person. A biochemist, diagnosed with Alzheimer’s at just 46, she wrote the book ‘Who Will I Be When I Die?’
In the book she talks a lot about the misconceptions people have about Dementia and disputes the ignorantly held belief that those living with the condition are mindless, empty shells. Her story is significant because of her deep conviction that people with a Dementia diagnosis can live with purpose and continue to have a life that is meaningful. Her advocacy has helped many living with the condition to continue a sense of self after diagnosis.
Not too long ago I had a memorable experience with a remarkable Dutch woman who had been recently diagnosed with a Dementia. I met her when I was working as a community carer. Her husband had passed away a year ago, so she lived alone. Her house was one of the most interesting homes I had ever been in. She was an artist and had spent her life creating detailed tapestries, oil paintings and these wonderfully bizarre sculptures with distorted faces that you can’t look away from. As we walked room to room discussing her life and her creations, she lit up.
She explained to me how she can no longer make tapestries as the threading is too complex for her, but that her daughter comes round every Sunday, and they paint together. She told me about how it’s her favourite day of the week and that she’s always looking forward to it. She took me to the room where she and her daughter complete this weekly activity and it was bursting with canvases. Sure, there was a decline in the quality of the paintings she was producing now, from the ones she painted before her diagnosis, but that didn’t matter. It was the process that she was getting enjoyment from.
Throughout the visit she had moments of frustrations where she couldn’t recount who the woman in a photograph was of a New Year’s marked 1994, spent with a group of friends. ‘That’s the year I was born’ I told her. ‘Oh, me too!’ she replied excitedly. She couldn’t tell me if she had eaten that day. ‘I might have had a sandwich earlier. No that’s not right, it was hot. Oh, I don’t know, anyway…’ Despite these moments of uncertainty, her extraordinary spirit and love for a creative life still shined through. When the hour was up, she waved me off, smiling ear to ear then headed into her perfectly pruned garden, gloves in hand.
Identities are not gone. They do not simply slip away into a void, leaving you a stranger to yourself and loved ones. Their character is retained. And everything else evolves into something new. Bryden replaced work with advocacy. The Dutch woman picks up her paint brush. With the right support and encouragement, we can help people with dementia to continue living a meaningful life, and to convey positive identities which are complete expressions of their personhood.
Where are they going now? What will they do? They are on their way. This is the path they walk now. Altered and unsteady, and still just as significant.
Occupation is often directly linked to Identity as demonstrated in these stories. To learn more about how the two are connected, we invite you to click on the below links which will take you to Connections Count, which is a movement born out of our philosophy that quality of life is directly attributed to the quality of connections we make with other people – IDENTITY, OCCUPATION and INCLUSION.