My shoulders sank with a big sigh as I read another well meaning dementia-related post on Facebook this week, asking followers to support “victims & families affected by this cruel illness” and to share the post which describes the person living with dementia as “imprisoned in one’s own rapidly shrinking brain”.
The post went on to say that “as the patient’s brain slowly dies, they change physically and eventually forget who their loved ones are” and warning that “there is no cure and there are no survivors – patients can eventually become bedridden, unable to move & unable to eat or drink.”
From both a professional and a personal perspective, this is not my take on living and dying with dementia. First of all, the term dementia, a bit like the word paralysis, is a general term. Dementia means a decline or a loss in cognitive (thinking) ability while paralysis means the loss of the ability to move in part or most of the body. There are many reasons why a person might be paralysed and the nature and extent of the paralysis will be different for each person.
Similarly there are numerous reasons why a person might be experiencing a decline in cognitive ability, the two most common of which are Alzheimer’s Disease and Vascular dementia. The symptoms of each are very different and, particularly with vascular dementia highly individual. Furthermore, the course for each type of dementia can progress over several years and it is certainly not the case that in the early stages (if at any stage at all) the person feels imprisoned or is experiencing physical changes and forgetting loved ones.
Person Centred Care offers a bio-psycho-social take on dementia and it is endorsed by the powers that be – the Department of Health and the Alzheimer’s Society to name but two. Bio-psycho-social I hear you say…. what on earth? Well it simply means that the experience of living and dying with dementia is influenced by biological, psychological and social factors – a sound logical underpinning to the idea that we shouldn’t be making sweeping statements about what its like for any one person or any one family to live and to die with dementia.
I cared for my own father, here in my family home alongside my husband, teenaged daughter nearly teenaged son and our beloved dog Ruby (two of these really struggled with having Dad living with us – I’m not saying who!) – for the last year of his life.
Dad had vascular dementia, kicked off by a stroke and then more random bleeds over time affecting initially his visual perception, his orientation in time and his ability to “start off” activity. Without help, he would have frequently got lost in the house or in the community and he would not have been concerned or able to wash and dress himself or to look after his own diet and nutritional needs.
Dad did change physically and he did become bedridden but these did not define him and these things only happened when we actually got into the “dying” bit in the last few weeks of his life. At no stage would I have said he was “imprisoned” and he did not forget who his loved ones were. He talked about his brothers and sisters, some of whom had died, and of his parents and childhood friends right up until the end of his life. I know that some people living with dementia cannot visually recognise their family and friends but there are more types of recognizing than visual: and importantly, their friends and families know often intimately who they are and relationships continue.
I believe that my dad’s last year of life was a good one. We watched films together, did crosswords together, laughed a lot, talked a lot, he slept a lot. Sometimes he would tell me what he has just dreamt about whilst napping, very often dreams of his mother. I remember I shared one of my dreams with him. Dad, I said, I dreamt I was walking through the front room and you were sat at the end of the room smiling and waving to me. I was, he said.