I’ve realised that it’s now thirteen years since my mum died. Thirteen years is a significant length of time to me, because that’s how long I looked after her for whilst she lived with dementia.

The realisation has made me better able to grasp just how long I was a carer for, but what particularly strikes me is that many of the carer emotions are just as strong now as they ever were; episodes of trauma are just as powerful in my memory as they were at the time, but the many day-to-day incidents and situations of our journey together are also as clear now as they were then – and still able to bring about the same feelings. Being a carer can be a whole way of life, an identity. 

This is why healthcare teams need to fully understand the role and viewpoint of the committed family carer, so that they can work appropriately with them as the person with dementia accesses healthcare; they need to be sensitive to the heightened emotions, the determination to protect the loved one – and also the huge store of knowledge the carer may have which will be invaluable to the healthcare team if they need to temporarily take over a large part of that care.

Right from the beginning, the Butterfly Scheme knew it needed to work with the person living with dementia, the healthcare teams and the family carer equally; this later became known as the Triangle of Care. To fail to place enough value on the input of any of these three contributors is simply to fail to deliver optimal dementia care.

Whilst we always put the person with dementia first, we absolutely must take care of the carer, because their value along that person’s journey is immeasurable.