Recently, Nazareth House Cape Town was privileged to host a conversation between Doctor Rayne Stroebel and Professor Andries Baart, entitled “The Lived Experience of People Living with Dementia”. The dialogue provided fresh perspectives on this often-stigmatised condition and left us with some valuable take-home thoughts. Here are a few things to reflect on if you care for someone living with dementia …
1. Good caring starts with relating
Professor Baart put it so aptly when he said: “If you want to be for someone, be with them.” Caring requires us to put everything that we want for the other person – or everything we think they need – between brackets and to find out what they really long for. We tend to think of caring as a task that needs doing, but if you are to relate to the other person, you may need to stop doing for a while, in order to start being with the person you care for.
2. Draw on your own experience
We can never fully understand the lived experience, especially of the later stages, of dementia. What we can do, is to go back to a moment in time when we ourselves felt confused or overwhelmed, and to draw on this experience in relating to the person cared for.
3. Be competent in your powerlessness
Competency and powerlessness seem like contradictory terms, but when caring for someone with dementia, you are asked to marry them. You have to become skilled in accepting that you don’t have control over dementia or the person suffering from it – this ties in with the idea of doing less and being more. You have to be humble enough to accept your powerlessness and take on the rhythm of the person you care for, rather than forcing your rhythm on them. You may even find that caring becomes less of a struggle if you can manage to do this.
4. Your attitude matters more than your knowledge
Yes, knowledge is power, but it can also get in the way of caring. Professor Baart likened our knowledge of dementia – all the books and articles we’ve read – to objects placed in a trolley. Often we push this trolley as we approach the person we care for and it obstructs the distance between us and the person with dementia. He advised that we rather put our knowledge in a “backpack”, get close to the person we care for, and then take out from the backpack only those items that we need.
5. A person with dementia is not a problem to be solved
When faced with a challenging situation, it is only natural to try everything in our power to find a solution. But it is no use doubling or tripling your efforts to solve the problem when caring for someone with dementia, as there is no solution to be found – and the person is not a “problem” to start with.
6. There are no rules
Doctor Stroebel emphasised that “if you’ve met one person with dementia, you’ve met one person with dementia”. No two people living with dementia are the same – each arrives at the door of dementia with an entire life behind them and a fully-formed identity. If we are to care respectfully, we have to take this into account. Therefore, there can be no hard and fast rules for how to best care for someone with dementia. The best approach is to really see the person you are caring for, and then to approach your care in a reflective, flexible manner. Always be willing to adjust.
7. Dementia is a disease of the mind, not the soul
A person does not become less of a person when they develop dementia. There is a stigma that clings to the condition and, in the end, our approach to dementia will determine how we treat those who suffer from it.
8. Nobody suffers from dementia alone
Every person with dementia has a family, a wife, a husband, friends … It is important to remember that the entire social network suffers.
9. People with dementia have a lot to give
In the past, people with dementia and other psychiatric diseases were often shunned from society or viewed as a burden. Professor Baart argues that we need people with dementia in our society as they have a lot to teach us about surrender, humility, patience … We need them in order to understand what humanity is really about. Doctor Stroebel added that care would look very different if we stopped treating those with dementia as lesser beings and approached them as mystic figures and teachers instead.
10. Self-care is the basis of caring for others
You cannot care for someone living with dementia if you yourself aren’t cared for on a physical, emotional, and spiritual level.
Doctor Stroebel and Professor Baart began a very interesting and necessary conversation that needs to be continued by those who care for and about someone living with dementia. We would love to hear your thoughts on the topic.
