Interesting zoom discussion yesterday about activities for people living with dementia. Memory cafes. Care homes. Deep groups. Any groups.
Why is it that people without dementia think that people with dementia have to have activities planned and provided for them?
So, the good reasons might include…
Brain stimulation is good. Helps to retain skills and thinking processes.
Games are fun, and fun is good.
They will enjoy doing these things, won’t they!
Less good reasons are…
We think that we know best, what is good for you.
We can’t ask you what you want to do, because you cannot think or communicate.
We are professionals who know best.
We are paid to provide activities, so we provide them.
There is obviously nothing going on inside your head, so we will provide something for you to think about.
We can’t stand not doing anything to justify our existence and just sitting there.
Good intentions all round, of course, and I am not writing this to bash people over the head.
I am writing this to tell you, We Are Still Here!
Take the classic stereotype of people living with dementia. They sit and stare. They cannot feed themselves. They cannot speak. They cannot recognise anyone. They suffer unspeakably.
You and I both know that this is a complete lie, concocted and promoted by media and reporters who are too lazy and uninformed to find out the truth. By uninformed fear and prejudice.
Yes, we may well suffer, from time to time, as dementia is slow death, a journey from healthy brain to diseased brain to death. As is all human and animal life. We will have bad days, aches, pains, upset, despair, illness, trauma, loss…just as you will. This is normal. This is LIFE.
Yes, we may gradually lose the brain connections that enable us to use our hands in a coordinated way to lift food to our mouths and swallow it.
Yes, we may lose the brain connections to find words and memories.
But all my experience tells me that people with dementia actually know the words, they just cannot quite say them. People say, I know the word but I can’t just say it. And this means they are still thinking that word, and the meaning of that word. It does not mean they cannot think.
This is really important.
We often believe, emotionally at least, that silence is difficult, or embarrassing. If we are in company we should talk. And if we are not engaged in conversation we are somehow not present.
But plenty of people will tell you that they get immense pleasure from just being with someone, without any words being spoken. Because they have emotionally pleasing thoughts, or unspoken words, related to the person they are with.
This must be one reason why people in care homes with advanced dementia get great benefit from visits, even though they may not express any understanding or recognition at the time. Their mood and sleep improve afterwards, unless the visitor was an unwelcome one!
When I wake up in the morning I don’t immediately start to talk. What is in my head? Dreams. Thoughts. Feelings. Physical stimuli from the bed clothes, or an aching hip, or a wonderful brightness after a good sleep or a good dream.
The fact that I don’t tell the world what I am thinking the moment my eyes open does not mean that I am not thinking those thoughts.
So why assume that a person with dementia who has lost some power of communication and cannot find words to speak is not still thinking and very much alive inside?
It takes empathy, understanding and patience to know someone.
There may be periods of silence, perhaps long, where just sitting and looking seem to be all that are going on. But you must know that inside that brain opposite or beside you there are thoughts and conversations and journeys and memories, pleasure and pain. You can share these by just sitting and being there.
We do not need word searches, singing songs you choose, picture books.
We do need physical activity, and opportunities to see and smell and feel what has given, and still does, give us pleasure.
Dementia results from brain disease. We may well live with that brain disease for thirty or forty years. The symptoms may not become apparent for twenty years. They will appear, bit by bit, over years usually, and they will be different in every person.
A diagnosis does not change us. It reassures and frightens in equal measure, but it does not speed up or slow down our disease. It does enable treatments for some types of disease which can help enormously. And it enables us to look the disease in the eyes and say, I am still alive; you’re not having me yet.
Wherever we are in our journey with brain disease, we are still who we are. We still enjoy what we enjoy. We want to continue to do what gives us pleasure and what makes getting out of bed worthwhile.
It’s what I want that matters to me. Not what you think I might want or need.
Ask me. Find out about my life. Ask my friends and my family what I enjoy.
Don’t think you can ever know better than me what I enjoy and what I need.
Your job, paid or unpaid, is to help me find opportunities to do what I enjoy.
NOT sit in a circle in a church hall, facing people I don’t know, singing a song I don’t like, or doing a bloody word search.
Unless I actually want to do that. And I don’t.