Understanding Dementia With Professor Graham Stokes of HC-One

"In many ways people living with dementia have dropped out of time. In no meaningful sense do they have a past that reassures or a future to look forward to, all they have is a present."

Clinical Psychologist, Professor Graham Stokes of HC-One, outlines why person-centred care is so important when caring for those living with dementia.

Over the past thirty years our understanding of dementia has been transformed. The knowledge that brain disease does not, and never did explain everything, was not uncovered in the laboratory. It was not the product of an elegant medical breakthrough.

It came about through appreciating the experiences of people with dementia as they attempted to live their lives whilst slowly losing their ability to remember, speak, understand, and think, and their anxieties, embarrassment and frustrations mounted.

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The Person-Centred Model

This is the best way to understand dementia. It is an incapacitating intellectual disability caused by brain diseases, the effects of which are exaggerated and complicated by the eventual loss of insight, for one day the person will no longer know they are forgetting, will not understand why they do not recognise the world around them, and will no longer be able to realise the consequences of their behaviour.

What has become known as the person-centred model of dementia is founded on the experiences of people who never knew that one day, they would be affected by a condition that would ultimately blight their lives.

You would not need to turn the clock back more than a few years to find a person who was like us in every way, shape and form, enjoying the same pleasures as we do, facing the same trials as our own, blissfully ignorant of the fact that before too long they were to be diagnosed with dementia.

This article is about people, not dementia, and not only about who they were, but who they remain and how caring relationships are the key to giving people with dementia peace of mind and a quality of life that is worth living.

Relationships between those who live in a dementia care community and those who work in that community. Relationships that release the therapeutic potential of nurses.

For therapy is an action or intervention that makes a person feel better, whether it be a specific treatment, medicine, or conversation, or in the world of dementia care ‘being there’ listening, understanding and supporting.

And we set the therapeutic bar too low if we limit our horizons to providing good care, for supporting someone to wash, bathe, dress, eat and use the toilet enables them to be alive, it does not give them a reason to be alive.

People Living With Dementia Have Dropped Out Of Time

In dementia care the therapeutic ground nurses so often occupy is the ‘here and now’, for in many ways people living with dementia have dropped out of time. In no meaningful sense do they have a past that reassures or a future to look forward to, all they have is a present, and because of their impaired ability to retain information this in its own right is fleeting.

So, if all around gives them nothing other than a sense of loneliness, fear and insecurity this is their life, for the present is all there is. It is in these moments that nurses demonstrate their person-centredness and their therapeutic skill to make these moments meaningful and maybe magical.

And it doesn’t matter if minutes after having smiled or laughed the person with dementia has no recall of their happy moment, for in no way does this diminish the joy the person felt at the time.

However, it has been reported, including my own research that when relationships make for well-being, we observe that when this consistently happens a person living with dementia’s mood can improve and they become more like their old selves, as if they have been temporarily restored.

Dementia Care Needs To Be Person-Centred

Yet why are there still too many instances where people living with dementia, especially as they progress to advanced stages, are cared for in ways that do not feel person-centred?

Care that doesn’t seem to be based on a person's need for respect or is inconsistent with a person's routines of a lifetime or having been helped to be ready for the day, their day never begins.

It’s because supporting people living with dementia care is not easy. For decades the belief was held that dementia was a terrible affliction, ‘it destroyed the person, and left the body behind’. People who are no longer inside themselves, and having departed all that is left behind is a shell that now plays host to symptoms of dementia.

Even today, for far too many people diagnosed with dementia, everything that happens after the diagnosis, is attributed to the diagnosis, not only if they behave in outlandish, heartless, and inexplicable ways, but even if they act in ways they have never done before.

They present as not only strange, they also present as strangers. How often do we hear partners and children say, ‘They’ve gone’, ‘That’s not my husband’. ‘If you’d known my mum, she was a lovely, gentle person. This woman isn’t my mum.’

Their changed behaviour is taken as testimony that their loved one is no longer present. This immediately puts nurses on the back foot because surely their family and friends know best.

Yet this where those who ‘get it’ step forward, empathy and curiosity, along with resilience and commitment drive those who get what it means to live with dementia, to see what everyone else is seeing, but to think what no-one else is thinking.

Understanding that distress and behaviours that challenge are windows into the uniqueness of people and their unmet needs. Searching for meaning reveals how the most out-of-character behaviours resonate with meaning, meaningfulness that is founded on who the person is, and how they need their life to be.

We Are All ‘Complicated’

As we put the person first, we ‘have a who’ as well as a ‘what’, but this doesn’t mean person-centred care is straightforward. In truth, it reveals that people with dementia can be a puzzle, but why should it be otherwise? We are all complicated.

Our family and friends may at times be mystified by what we do or say. We may at times be mystified by what we do or say, asking ourselves, ‘why did I say that?’, and sometimes being equally mystified by the answer.

So why should a person with dementia be anything other than similarly complicated in what they say and do, and this is before we consider the disabling effects of dementia.

By getting close to people with dementia, listening and thinking differently rather than looking and hearing but learning nothing, the more you appreciate that each person embarks on their own journey with dementia. All are resourced differently to cope and as such some cope less well than others.

In all instances and at all times knowing who people with dementia are must be the guiding principle that governs whatever we do to help them negotiate their entry into a world of not knowing.

And to truly appreciate this, nurses must not be seduced by what is obvious. Yes, a person with dementia’s intellectual powers are failing but we must never become preoccupied with a person’s dementia to the exclusion of all else.

If we do, all we see is difference, and if all we see is difference then we know we share nothing in common and then the danger is that we start to act and react to people living with dementia in ways that are insensitive and unthinking to the point where we may disregard them as people like us.

Caring For People Living With Dementia Is Often Undervalued

Instead, we understand the person as someone who is living with an intellectual disability who is trying to communicate who they are and who they have always been, while losing the capacity to remember all that once anchored them in place and time.

As their language crumbles and conversation is difficult, and as their ability to think and reason slips away and risk and vulnerability surface. Their behaviour and feelings may present as strange and disproportionate, but this is not a testimony to the person having been lost.

Caring for people living with dementia is too often undervalued when it is a role that most could never do. We must never fail to appreciate that husbands and wives, sons and daughters have placed those they cherish and love into our hands not because they no longer care, but because they do care, but they can no longer cope.

Most families are determined to care for their parent or partner until the very end, but for many it is not the very end, instead it is a bitter end. The caring partner or child no longer recognised is seen as a stranger, an interloper who shouldn’t be in the house let alone trying to intimately involve themselves in such private matters as dressing, bathing, and going to the toilet.

The demands of the so-called 36-hour day eat away at the capacity of families to cope, not simply because they are exhausted, but in the face of abuse, resistance and outbursts of temper, relationships are broken.

At this point those in social care step forward to take on a huge responsibility but who are also given an enormous opportunity to make a difference. To restore the person in the eyes of others and to enable stressed family carers to once more be husbands, wives, sons, and daughters.

In pursuit of these exceptionally rewarding goals, I hope we can agree that all we do to support people living with dementia and their families is diminished only by the limits we place on our ambition, imagination and humanity. There can be very few areas of nursing that provide a similar sense of achievement and job satisfaction.

A Case Story

Caroline was only in her mid-50s when she came to live in the care home. Diagnosed with probable Alzheimer’s disease when she was 51 years old, she retired from teaching on the grounds of ill-health a year later as the demands of being a primary school teacher became too much.

This devastated her, for teaching was where her soul was to be found. Unmarried and living alone, her life away from work had always been of secondary importance.

Caroline didn’t adjust well to living in the care home. This was less to do with living alongside elderly people and more to do with her knowing where she had to be, at school.

Living behind a baffled front door, her days were intolerable.

She would stand facing the door pleading, “I can’t get out. I’ve got to go,” and whenever she saw a passer-by, she would bang on the windows trying to attract their attention.

The home manager and Caroline’s key worker nurse, Tracey were sensitive to Caroline’s confused need to be at school. They knew she had been a passionate and devoted teacher.

To personalise her room, Caroline’s brothers had brought in artefacts and mementoes from school hoping these would occupy her through the day, but no.

Caroline would spend just moments glancing at the books and school photos before heading off to the front door pleading to leave. At this point, Tracey stepped forward and showed that she got what dementia care is about.

Simply placing items in Caroline’s room was never going to engage her for long, and it was never going to mitigate her distress. Caroline had to feel emotionally connected and engaged with her present, a present in which time-distant memories were now her restored reality.

Exercise books, pencils, rulers, and even a couple of teaching resources had to be purchased. A table in the lounge was now resplendent with all you might expect to see on a teacher’s desk.

A small pile of books, a globe (Caroline had taught a bit of everything but geography was the subject she enjoyed most), a pencil box, books to ‘hand out’ and a photograph of her colleagues from school. It was Caroline’s desk. Yet, at best this absorbed Caroline for a few minutes.

She would soon push the chair away from the table and walk into the hallway. There was still more to do. To think differently. Our lives aren’t lastingly uplifted by things and places. Contentment and happiness come from relationships and the joy of sharing.

Caroline’s thrill came from the smiles of small children and the companionship of her colleagues. Teaching was her passion because of the children in front of her, not because of the items on her desk. There was no conversation, no sharing, and no laughter.

What had been provided was not wrong, it was just not enough. Tracey now positioned the ‘desk’ so it faced the lounge giving the impression that the residents were pupils, yet she also knew that people had to engage with Caroline whilst she was at her ‘desk’.

Carers who would sit with her and chat about the globe, look at the books and ask Caroline questions about teaching. And so behind her ‘desk’ Caroline sat, not throughout the day, and not on all occasions, but for sufficient time for her need to leave the building for “Getting, going, going to school, my school” to have diminished.

Life had become more tolerable, not in terms of staff feeling less pressured but because the fewer times Caroline tried to leave, the more everyone knew she was now more content.

This was Tracey’s achievement. She had not simply mitigated a problem, she had made a difference to Caroline’s life, a life that was once more worth living.

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