Let's Talk Dementia

I received the most beautiful email response to my musings on dementia yesterday from one of my employees. (I am really touched by all the responses!) Her father-in-law lives with dementia, and she recently visited him in one of the care homes that I have been involved with for many years. It was his birthday. She writes that “he no longer recognises her or any of the grandchildren”. Yet, when one of the Care Partners helped him, he smiled and told the Care Partner “this is my goose!”, pointing at his daughter-in-law. Her immediate thought was that he mistook her for his wife.

This is something that happens all the time with people living with dementia – they will get family of friend connections wrong. They would often refer to someone as their daughter when in fact it is their spouse, or vice versa. How do we explain this?

People living with dementia are not emotionally dead, as we discussed before. In fact, they are highly attuned to their own emotions, and often freely express their emotions. The fact that they might get the connection wrong  as to who you are or where you fit into the family tree is not important. What is really important is the message behind the words. The statement “this is my goose” tells me that this man was expressing a feeling. In this case, a feeling of love and affection. Saying “this girl makes me feel young and loved” – as if it was indeed his “goose”. He might not have been able to identify the person, but he sure as hell knew how this person made him feel!

Many older people living with dementia would say that they need to go home to their parents, when we know that their parents died many years ago. Again, this could perhaps be an emotional expression of longing to connect, a need to feel loved, like they did when they were small with their parents. I often hear “I must go home, my children are waiting for me” or “I must go home to go and cook for the family”. These are expressions of emotions, the need to belong, a need for security, or a need for connectedness.

What would be the proper response from us? Engage with them on the topic. Ask questions like “do you miss your home?” Or start a conversation like “you must have been a wonderful mother for your kids”. Perhaps “I can see you miss your home and your family – come, I will give you a hug”. If someone talks about a spouse that died as if they are not dead, affirm the emotion, not the facts. “You must have loved your wife dearly. Shall we look at her photographs again?”

“This is my goose” – what a beautiful expression of love and emotion. I would have responded with “and you are my beloved”.

Yesterday we talked about connectedness, security and meaning. These are three of the “Domains of Wellbeing” of The Eden Alternative. We so often engage in a deficit discourse around ageing and dementia, our focus being on what is wrong with people. There is tremendous power in a different perspective – changing our discourse, our narrative, and our gaze. This is (as Sara Mills pointed out yesterday) the answer – not trying to find a cure for what I consider to be “elderliness”. We age, our brains and our bodies age. That will not change in our lifetime. There will not be a cure for ageing, it is the natural progression of life.

What can change is our response to it. And acknowledging that we are all on our way there. I am often asked what “person centered care” really means – and I have a simple reply: “how would YOU wish to be…?” I would like people to know what constitutes MY sense of wellbeing. To be well known, to have a strong sense of IDENTITY. To feel SECURE in my relationships, because I am well known. To have a sense of CONNECTEDNESS to the things and the people who make me feel secure and who affirm my identity. To have JOY – in my case that would be classical music, strong coffee, my dogs, my artworks around me, the people whom I love in my world, a gin and tonic at 17h00. (Strong one, please?) I need to continue to GROW – learn new things, explore interesting topics, and if I can no longer read, perhaps listen to audiobooks. I want to be able to make my own decisions and preserve my sense of AUTONOMY – even if I can no longer communicate verbally. I know who I am, and what I want. And ultimately, my life has to have MEANING. I want to have a purpose.

That is our role as Care Partners – not to focus on the deficits of ageing, but to support the domains of wellbeing of those we love. Do yourself a favour – start writing down your domains of wellbeing so that no one can doubt how to best support you one day when you might need it.

(PLEASE do not forget my gin and tonic!)

Leave a Reply

Your email address will not be published. Required fields are marked *