JACKIE POOL, DEMENTIA CARE CHAMPION – THOUGHTS ON THE LAST 10 YEARS

We are asking our supporters from the very first Alzheimer’s Show in 2013 to give us their thoughts on what’s changed in 10 years.Here esteemed Dementia Care Champion Jackie Pool shares her views.

Jackie, you joined us as an exhibitor at the very first event in 2013 and have supported us since. In the last 10 years, what are the key changes in dementia and care?

Well, I have been in dementia care since 1982 so a lot has certainly happened since then! It got interesting and hopeful in the 1990’s with the advent of person-centred approaches, championed by the late Professor Tom Kitwood, who I was privileged to work with. Up until then, dementia was viewed through the biomedical lens. In the 2000’s there was a strange backwards step when ‘person-centred’ was equated with only social psychological approaches and the cognitive symptoms were rather ignored. However in 2009, the National Dementia Strategy addressed the full experience of living with dementia with a framework for making quality improvements across all dementia services and addressing health inequalities.

Then, in 2015, David Cameron launched the Prime Minister’s Challenge on Dementia and made £150million available for research. This was added to with a further £40million and both Alzheimer’s Society and Alzheimer’s Research UK each contributed a further £50million. A UK Dementia Research Institute was established with the HQ and hub at UCL and 6 centres across Wales, England and Scotland. The research focuses on the biomedical causes, impact and treatment of the symptoms of dementia but very little on the psychosocial cause, impact and potential therapies

A National Dementia Mission was announced by Boris Johnson 14th August 2022 with an additional £95m in research funding and appealing for a ‘Babs’ army’ (Barbara Windsor) of volunteers to take part in clinical trials. And a new 10 year plan announcement was expected in Autumn 2022 but has been delayed.

Of course, in the last 10 years since 2013, we cannot ignore the impact of the 2019 and current Covid pandemic which not only has had a major impact on research but more so on the day-to-day lives of people living with dementia, their carers and services that support them. The meaning of person-centred care puts the person at the heart of their own care, recognising that their past history, personality, physical and mental health, cognitive impairments and their social and psychological environment all combine to impact on their ability and their well-being. The aim of person-centred care is to provide individualised support based on all of these factors but that is difficult to do when faced with the restrictions of such wide spread infection-control procedures combined with staff shortages.

At the heart of person-centred care is the value base of the care worker and the support of line managers to implement these – I have witnessed many beautiful moments when this has been evident but it isn’t consistent. My belief is that when services are stretched and care team members are under pressure, their well-being is compromised and, as you cannot give what you have not got, they are themselves undermined in being able to support the well-being of others. Instead they retract into a task based approach that ‘gets jobs done’

It has been noticeable over the last 10 years how many new products are on the market that are designed to engage people living with dementia, supporting their well-being and enabling them to use remaining abilities. It seems that commercial companies, many of them who have developed ideas because of their own experiences of a loved one living with dementia, are making great advances in supporting carers to deliver person-centred care. The risk is that these will be introduced into care settings without support to understand the full potential of the activity.

When the NVQ was replaced with the QCF in Health and Social Care in 2010, I developed for Skills for Care the award and certificate modules for dementia at levels 2 and 3 . I was hopeful that this would lead to a mandatory national dementia qualification but this has not been the case with the dementia module which are optional. Knowledge and skills in this highly specialised area of care work is essential and sadly, I am not witnessing enough improvement in this area. Training on its own is never enough, there must be the resources and the will to ensure that knowledge is translated into evidence-based best practice so that people living with dementia are provided with health and social care equality