DEMENTIA
The diagnosis of dementia oſten comes as a shock, but what those who have been diagnosed may not know, along with their friends and family, is that dementia care is better than ever, and we have many more tools at our disposal for ensuring those with dementia live full, rich lives. Crucially, these tools are not always found within traditional pharma research into a ‘cure’ for dementia.
In the wake of news such as pharmaceuticals giant Pfizer announcing it will end its neuroscience discovery programme, which includes research into Alzheimer’s treatment, the spotlight is increasingly on those efforts to tackle dementia that fall outside of traditional medical research.
The last UK Dementia Congress in November made the question “Cure or Care?” front and centre of the timely debate on dementia with which it opened. At the start of the debate, the audience was evenly split on whether dementia research funding should be refocused on care rather than cure. By the end, 64% voted in favour of care.
This shows the immense potential of non-pharma approaches to dementia care – and includes the huge contribution my own discipline, occupational therapy, has made to this field in recent years.
Dementia was not always understood in the way it is today. For a long time, it was considered a mental health ‘disease’ that was an inevitable consequence of ageing. In the course of the twentieth century, however, advances in medicine and research meant dementia came to be understood as the name for a set of cognitive and functional symptoms, which crucially are caused not only by neurological conditions, but also by the physical, social, and psychological experience of the individual.
Pioneers such as Professor Tom Kitwood compellingly showed that the symptoms of dementia are determined by people’s specific neurological impairments, by their own personality and life history, and crucially, by social psychology – how we treat those with dementia.
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His work, and subsequent research including my own, has resulted in a new understanding of dementia care, focused not only on supporting individuals to maintain their current abilities for longer, but also on restoring lost functions in many cases.
Researchers like myself have in recent years increasingly explored ‘rementia’ – the possible reversal of some of the symptoms of dementia. Central to this approach is the use of occupational therapy – helping people recuperate from physical or mental illness through particular activities. We choose these activities based on what those we are helping would like to re-gain – for some, it is making a cup of tea; for others, it is learning to use an iPad, or recalling the name of their best friend. People can re-gain lost skills, or set their own new goals, and occupational therapists help them understand and re-construct seemingly simple activities which in reality require a myriad of complex steps and movements, and are extremely taxing for the brain.
Underlying the practice is the latest neuroscience, which explores how function can be regained by establishing new links between neurons in place of damaged ones. This phenomenon of ‘rewiring’ the brain is well-understood – but has not yet been applied widely to dementia care, where it has the huge potential to help people in the early onset of the condition.
This ‘cognitive rehabilitation’ approach has been trialled to great success in a study funded by the National Institute for Health Research (NIHR). This formed part of the £22 million investment announced by the Government to fund cutting-edge research into the cause, care, and prevention of dementia – which is increasingly making the UK a world leader in the field of dementia care. Consequently, the use of cognitive rehabilitation and occupational therapy is also recommended by the latest draſt NICE guidance for dementia care.
Participants in the NIHR study received a cognitive rehabilitation programme from a visiting research therapist, trained and supervised by myself. It ended in March 2016 with an impressive 537 participants who lived at home with
the support of another person, with final results due to be published shortly.
The crucial next phase, which has already been funded by the Alzheimer’s Society, will seek to implement this ‘cognitive rehabilitation’ approach into health and social care settings, by developing a series of guiding steps that can be used by health and social care professionals.
Sunrise Senior Living UK, where I am Head of Memory Care and Programming, is participating in this exciting phase of study, which will measure the impact when professional care givers are supported to deliver the therapy. This will ensure that as many people as possible living in care settings can benefit from this revolution in dementia care.
Additional research is also being carried out into the impact of diet, exercise, sleep, stress and social relationships on people with the neurological conditions that lead to dementia – so that we can prevent and support people as early as possible.
These are groundbreaking ways of thinking about dementia, which are increasingly entering the mainstream as we collectively learn, as a society, the importance of creating the right supportive environment and interpersonal relationships for those living with dementia.
Jackie Pool is Head of Memory Care and Programming at Sunrise Senior Living UK and Gracewell Healthcare, and is engaged in several leading studies on ‘rementia’ – the ‘improvement of function, despite cognitive impairment’ that researchers are increasingly exploring for those living with dementia. She has over 30 years’ specialist dementia care experience as an Occupational Therapist, initially practising within the NHS and then in social care. 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.
www.sunrise-care.co.uk www.gracewell.co.uk
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