The experience of living with dementia is now viewed very differently from when I first began my nurse training in 1975. Care was task-driven to patients who were viewed as non-people; no longer there because of dementia. They experienced little meaningful interaction, social engagement and, sadly, no value was placed on the person as an individual. Undoubtedly, there was an element of unconscious incompetence on my part as a student nurse. We have moved away, thankfully, from this stance of nihilism and of the person being lost to the disease while they are still alive, to one of personhood and of living well with dementia. There may be several reasons for this, both in the UK and worldwide. First, I would argue, this has changed through the work of Tom Kitwood, the pioneer of person-centred dementia care; secondly, through the first national dementia strategy (Depatment of Health and Social Care, 2009); and thirdly, as a result of the work of the many amazing ambassadors of people living with dementia who have shown and continue to show us what it is to live well with dementia.
Shift in focus
The late Tom Kitwood, building on the work of Carl Rogers, developed the concept of person-centred care for people with dementia (Kitwood, 1997). Proposed first in the late 1980s at the University of Bradford, UK, Kitwood shifted our focus from seeing dementia first, as a challenging disease process, to seeing the person first and their uniqueness as an individual with preferences and needs that require us to meet them. He introduced us to the notion of a biopsychosocial model of dementia care; encouraging us to think in holistic terms, where a dementia diagnosis does not define a person entirely and there is more to an individual than their medical condition.
The first national dementia strategy was heralded in 2009. It was marked by the mantra that was woven throughout of ‘living well with dementia’ and one of its central tenets was raising awareness of dementia. It proposed that an individual could still live well with a diagnosis of dementia. Along with this came a campaign to raise public awareness of dementia, raising diagnostic rates and developing dementia-friendly communities, among other recommendations. Through increased public awareness we were encouraged to understand the person's retained uniqueness, their abilities and value of their life experiences and relationships.
This enabled the emergence of the ‘expert by experience’, of people living with dementia being ambassadors in the field, helping us to see the world through their eyes and to see what is still possible, even with a diagnosis of dementia. These ambassadors strive on behalf of their 944 000 peers for recognition, understanding and to be honoured for the uniqueness of all people living with dementia. They have a focus on retained abilities, not on the deficits, through the lens of a disease that strips a person of their very self. Many of these ambassadors also support us in the research world to study things that are meaningful for people with dementia, advise and guide us in our methods of enquiry and presenting results that speak to their lives and needs.
Advances in dementia care at risk
So, why is this important? The strides and advances that have been achieved over the last 3 decades are constantly being placed at risk. It can happen in innocuous ways, such as a care worker approaching care in a task-focused way for speed, unknowingly undermining the abilities of a person living by dementia, perhaps unwittingly outpacing the person by dressing them, doing up their buttons and combing their hair, rather than pacing it more carefully to allow them to do such things for themselves. It can even be through the negative language we use from day-to-day, such as labelling a person a ‘dementia patient’ or ‘dementia sufferer’.
However, more recently we have seen a media campaign called ‘The Long Goodbye’. We enter a funeral wake as a son is delivering a eulogy about his mother, who has died, with dementia. He tells the wake of each time his mother ‘died’ during her life with dementia, yet she ‘lived’ on. He speaks of each of the losses that many people experience along the trajectory of the disease as a death. This narrative, of the person with dementia being seen as already dead, long before actual physical death, is unhelpful and takes us back to before Tom Kitwood enabled us to see beyond this nihilistic and outdated view.
Many of us have worked hard over the years to dispel the strongly held myths around what dementia is and what it isn't. In my own work, I have written extensively for a generalist nursing population about what constitutes good dementia care, and how nurses can support those on their caseload affected by dementia, who probably also have other comorbid conditions. Person-centred care is at the heart of all of this work. It helps us as nurses to see beyond the dementia and provide care based on understanding, compassion and hope. It is vital that we embrace dementia positively, especially since one in three people will experience dementia later in their lives and many of us will know or care for someone with dementia in our lifetime. Nurses, given their close proximity to people with dementia and their supportive family/carers, are in a key position to ensure the advances made over time hold true. It is at a time like this that we may need to be stronger in our stance on supporting positive and person-centred dementia care.
I wonder what Kitwood would have made of this, what he would have had to say? Perhaps I already know.