Over the years I have witnessed many attempts at “doing activities” with Elders living with forgetfulness that have really been meaningful engagement. However, I have also witnessed activities that were pure torture. In one such instance, the employees of a home “that specialised in the care of people living with dementia” (their claim) the employees put wigs on the heads of Elders (without asking their permission) and started singing and dancing with full gusto! The Elders, who could no longer communicate verbally, were more shocked than anything. When they eventually figured out that the staff wanted them to smile, the dancing crowd erupted with shouts of joy! “Look what we did – we made them laugh!” I cringed and actually wanted to cry. It reminded me of circus animals being poked with a stick to dance – the harder you poked, the more they danced.
These were not mean or horrible employees. They did not know better and thought that their duty was to cajole Elders living with forgetfulness “OUT OF” their state of being in the world. Being quiet was considered being lonely or withdrawn – it was the job of the Carers to make sure that everyone was having a good time. And goodness knows they worked hard at it.
The look in the eyes of the Elders was of pure bewilderment. They did not know what on earth was happening. No one told them what was going to happen or asked them if they were in the mood for this frivolity. It was just assumed that they would join in and have fun.
We so often get this wrong when we think that it is our duty to “entertain” Elders. It is not a creche. We are not dealing with children who need to be entertained or cajoled. In a Care Home that I started, we often heard that “Elders are just sitting”, and families feel that we “should do something with them”.
Creating an environment that supports people living with forgetfulness is in my opinion creating a space for contemplation, a space that supports them to do the things that all of us would do in our daily lives. These would include making a cup of tea, looking at the garden through a window, watching a pet play, listening to your favourite music, having a manicure or pedicure, and helping to cook, clean, or iron. It is different for every individual. Remember – if you have met one person living with dementia, you have met ONE person living with dementia.
If anyone decides to clown around in front of me, put a silly hat on my head or force me to listen to singalongs or make me colour in simple pictures, I will definitely react in a way that would not be considered appropriate. The sad thing is – these kinds of reactions are then considered to be “aggressive” behaviour of the Elder, most definitely ascribed to their “dementia”.
People living with dementia very seldom are “aggressive”. They are often irritated, frustrated, depressed, humiliated, and sad. And they show this in their behaviour, mostly in reaction to the way that they are treated. Often people living with memory loss will withdraw inward more and more, simply because the world out there feels too threatening, too loud, and too scary. This is when they need a place of quiet contemplation, a soothing environment that is familiar to them.
At one point the “Snoezelen Rooms” were installed in Care Homes for people living with forgetfulness – a room filled with lights and sounds and other artificial stimuli. Even though there is hardly any evidence of this working, it gave Caregivers the feeling that they were “doing something” – regardless. Yes, people living with forgetfulness need stimulation, as we all do. But their needs are no different from yours – the need to be surrounded by appetizing smells for instance. Freshly baked bread, fried onions, coffee brewing. The sound and sight of birds in a bird feeder, the wind through their hair. The smell of a garden – roses, lavender, thyme. The sounds of children laughing. Thanks to the bio-medicalisation of dementia, we have now created “therapies” – listening to music has become “music therapy”, stroking a favourite pet has become “pet therapy”, gardening has become “horticultural therapy”. Life has become therapy – we even create artificial animals for stimulation!
There is a place for therapy and for activities. However, there is also a place for just living a quiet life, filled with authentic relationships, meaningful engagements and simple pleasures. More often these activities and therapies are designed to keep employees “busy”, with little regard for any outcomes that might enhance the quality of life of Elders.
Maybe our biggest challenge is the fact that we and it so difficult to just BE. To be truly present with an Elder – even when cleaning their room, making their bed, washing the windows – is the greatest gift of validation, saying “You matter enough to me that I can be fully engaged, right here, right now, with you”. Validating the personhood of someone living with forgetfulness does not mean that you have to make them laugh or sing. As Tom Kitwood pointed out – “Personhood is a standing or status that is bestowed upon one human being, by others. It implies recognition, respect, and trust”. I would want to take this further – personhood should also enhance “agency”. Creating a relationship that is reciprocal, where there is shared power. This will happen when we start seeing Elders as our teachers. Regardless of cognitive ability, they will teach you kindness, forgiveness, tolerance, and patience. God knows we can all do with a bit of that!