My 40-Year Journey Taking On Dementia

Gracewell  |  December 6, 2017
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In a series of articles, leading Occupational Therapist specialising in dementia Jackie Pool, recently appointed Head of Memory Care and Programming at Gracewell Healthcare, will be making the case for ‘rementia’ – the ‘improvement of function, despite cognitive impairment’ that researchers are increasingly exploring for those living with dementia.

Here, she tells us about her journey to becoming one of the UK’s leading dementia specialists – and what made her decide to take the fight to the condition, which affects increasingly more people in the UK.

When I was a child, my Gran had dementia. Only we didn’t know that it was dementia – or what dementia even was. We could see that she was ‘acting strangely’ and needed our help; but our lack of understanding of the condition – there was no information, help or support available – meant we did not support her as well as we could have. Hindsight is always a wonderful thing, and I wish I had known then what I know now.

Fast-forward to the 1980s, when I was in my early twenties and beginning my life-long pursuit of studying how to live better with dementia, by becoming an Occupational Therapy Assistant in a hospital in the north west of England. Those were different times: hospital services were known as ‘psycho-geriatrics’, and the building in which I began my career had previously been a workhouse for the poor and destitute.

Dementia was little studied and little understood then. It was widely believed that as the cause of Alzheimer’s Disease was not known, nothing could be done to help those living with dementia apart from keeping them clean, safe, and occupied. There was no anti-dementia medication and patients were routinely given anti-psychotic medication to ‘fix’ any behaviours considered challenging. 

Caring was a task, in those days, and carers had no idea how to support patients to actually improve in their cognitive function. My very first experience on the ward almost put me off a career in dementia care. A clearly distressed elderly lady grabbed my arm as I walked past, and with great urgency said, “Toilet!”. As I tried to get help, one of the nurses, who was having their break, wearily told me that it wasn’t time for doing the toilet round yet. Later, the toilet round was revealed to be a deeply undignified spectacle. A bin bag was placed in the centre of a circle of chairs bearing the elderly ladies. Each then had their incontinence pad removed in full view, placed in the bin bag, and replaced with a new one. I went home in tears that evening, wondering what sort of work this would be.

I became convinced that there must be more we could do to empower those with dementia to live fuller, more dignified lives, and improve their cognitive abilities as much as possible.

So I decided to enrol to train as an Occupational Therapist (OT), and three years later, started work in North Wales, at an Older Peoples’ Mental Health Services Hospital. As you can see from its name, the language around dementia and similar conditions was already beginning to change.

I was inspired by the work of Tim Kitwood, a psychologist at Bradford University, who was considering dementia in ways no one else was, and putting forward some ground-breaking ideas for how we can help those living with it. He advocated an approach he termed ‘rementia’ – the potential of people with dementia to improve in function when a cognitive rehabilitation approach is used. This meant a framework was emerging for understanding and supporting people who are living with dementia, rather than accepting their disability as irreversible. It gave us new hope.

I went on to develop my own approach for innovating in dementia care. It took the idea of supporting people to live well with dementia and pushed it further to also help people improve their cognitive function. Over the next decades, I set up my own dementia care consultancy, which rapidly grew as more and more care providers asked me to deliver training for them, into a UK-wide and international training and consultancy service.

So when my mum developed dementia in 1995, I was incomparably better prepared to support her through her complex needs. I felt fortunate to be able to use my knowledge to help Mum during the stages on her own journey. 

To date, my journey with dementia has lasted over 40 years – during which I have developed clinical reasoning and practice skills, delivered hundreds of training courses to thousands of care workers, created resources that are used around the world to support dementia care development, spoken at national and international conferences, contributed to Government strategies and been a Dementia Ambassador, a Dementia Friend Champion, and a member of the Dementia Action Alliance. 

I have dedicated my own life to trying to improve those of people with dementia, and have no intention of stopping anytime soon. Today, I am supporting innovation in dementia care at two of the most innovative care providers in the market, Sunrise Senior Living UK and Gracewell Healthcare, as their Head of Memory Care and Programming – and currently writing a book to ensure what I have learnt reaches those who would benefit the most.

Jackie Pool has over 30 years’ specialist dementia care experience as an Occupational Therapist, initially practising within the NHS and then in social care. She also founded a UK-wide dementia care and training consultancy, accumulating 20 years of experience as a director. Her professional background as an Occupational Therapist gives her a perspective on healthcare that means she is at the forefront of her field in designing solutions for clients in dementia care.