Living with the challenges of dementia

Dementia is becoming an increasing challenge, not only for many older people, but also for their close family and friends. It is particularly challenging for family members who find themselves in the role of carer or needing to support a parent or spouse with the illness.

If you find yourself in such a role you will doubtless experience a whole range of emotions. Many of these are so-called “negative” emotions – such as anger, sadness and helplessness. But, unpleasant as they may be, such emotions are completely normal in this situation. You may also experience guilt if you find yourself feeling what you regard as “uncaring” emotions towards the loved one – such as anger.

I believe it is very important to normalise such emotions because much of the message we get from our culture is to hide such emotions, to medicate them or to judge ourselves harshly for having them. The more we can make a place for these emotions in our lives, the less toxic they become.

I believe it is helpful to see dementia not as just a medical disease but also as something that has important psychological and emotional meaning, both for the person with dementia and the carer. That is why I encourage the carer, for example, to view the person with dementia’s unusual behaviour as not simply random acts caused by the deterioration of the brain, but perhaps as communicating a deeper meaning relating to that person’s life or experience. Understanding the person with dementia’s history and early life can shed light on behaviour in the latter years. Unresolved issues from childhood may be reactivated and the carer may be drawn into this and have their own, earlier, unresolved issues touched.

The way in which the person with dementia copes with the ongoing loss and deterioration of the illness may in part be influenced by much earlier experiences in their lives.

By becoming empathic, trying to see the world through the person with dementia’s eyes, we can begin to understand some of the unusual behaviour. And in letting go a little of our expectations of a “normal” relationship we may become open to something new, something different. This could be a moment here and there of calmness and connection with the loved one, an awareness that we can temporarily let go of our everyday worship of time or a discovery within ourselves of unknown reserves of patience or love.

Letting go of our usual expectations of relationship opens the door so that, in this very difficult experience, there is the potential to find meaning. It is often through suffering that we learn, that we find meaning, even if that meaning does not become visible until long after the event.

Living with the Challenges of Dementia: a Guide for Family and Friends, by Patrick McCurry, is published by Sheldon Press on 16 July 2015. It is available for pre-order before then, at Amazon.

Patrick McCurry
Eastbourne
London