I had a conversation with Karin Meijer, coordinator of Odensehuis Andante, a walk-in home for people with (beginning) dementia in Utrecht. That was no coincidence, because she still has the dream to do something with loneliness with her own company.
Karin: “What I always notice is that people so often assume that loneliness can be measured. That if someone has a lot of people around them, he or she will not be lonely. That is a huge misconception that must be removed from the world. Many social contacts are really no guarantee.”
We come to the question whether loneliness is always something negative. And that too turned out to be food for thought.
Karin: “I think that if you consciously choose for loneliness, it is less annoying. You may wonder whether you choose for loneliness or for being alone. But I was thinking recently why you would like to seek solitude. And how that manifests itself. For example, are all those people who walk around unperturbed with ear pods in really enjoying their music, or do they deliberately separate themselves from constant stimuli and superficial contacts? I do have periods when I am less 'social', looking for less company. That is precisely because I want more depth, more quality than quantity. Because sometimes I feel even more lonely with that quantity than when I barely see anyone. A lot of contacts are of no use to you if you are not really understood and seen.
Loneliness can be temporary, but it can also be embedded in your personality. Either way, you can break through it occasionally, such as doing something fun with someone or making friends, if you can. But really solving it is difficult. You can train your assertiveness, but what about loneliness? Can you "train them away"? But what is the status you are working towards? What is the opposite of loneliness? "
We talk about this question for a while longer. And we even get someone else there: the partner of one of the participants at the Odensehuis. Together we come to the conclusion that the opposite is empathy and / or connectedness. And that is exactly an issue for people with dementia. Because of their illness, they make less and less contact with the outside world, for example because they can no longer follow conversations due to their faltering memory. Or because they "roll back" further and further into their past, while their loved ones move towards the future. The gap is getting bigger and the connection is getting smaller. If that doesn't result in loneliness….
Karin: “The bitter thing about this loneliness is that it is often overlooked. Someone no longer responds, or no longer responds as you are used to. Then the need for contact will no longer be there. That's really not true! It just changes. The contact may become less verbal. People who are really far in their process often have what is called "skin hunger"; the need for contact by touch. By gently touching someone, you can "read" if they like it, because that is of course a condition. If someone relaxes completely, then you are in the right place. For example, keep your hand on someone's shoulder for a bit longer. And look someone in the eye. That also creates solidarity. And really no one can live without it.”
The partner nods. Her husband is not that far yet, but he is already experiencing the devastating effect that dementia has on connectedness every day. “You start in a relationship as equal partners, you are together and you do things. You talk to each other and are connected in every way. When one of the partners is dealing with dementia, the other automatically becomes a caregiver. The contact becomes more complicated, because you simply cannot talk to each other so well anymore. Then that gap arises within your relationship. You are not lonely or alone in theory, but in reality you are. And you bet it hurts.”
Karin: “The bad thing is that people with dementia can often no longer explain that they are lonely, they need a connection. This is reinforced when people start to think that having a nice chat with someone with dementia is useless. The whole conversation is nevertheless forgotten. But that is so sad. For example, if you reminisce about beautiful memories, they will be gone in no time, but the emotions that go with them will linger for a long time. Someone who only communicates through the skin cannot remember the fact afterwards, let alone tell how nice it was. He or she will still feel very nice for a while. It would be great if people realize that. You can then easily get someone out of isolation, even if only temporarily.”
I think of the times when I regularly pet people in my mother's most heavy nursing home, look them in the eye, and smile at them, even though I don't know them. I always get a smile back, sometimes a pinch in my arm, sometimes just a conversation. Every day, all day, a lady walks up and down the hallway. Kilometers. Sometimes she has a crocheted cat in her arms. Since I have always greeted her and talked to her from the start, she now sometimes invites me to walk along. Arm in arm. And sometimes I can hold the cat. That feels like a mega reward. And less loneliness for the lady.
Don't you forget to keep in touch with people with dementia?
Ineke Buijs is researcher / designer at ftrprf. She wrote this article in a personal capacity for the theme Social Cohesion, with the collaboration of Karin Meijer and Tineke Krikke, Odensehuis Andante