Last Thursday experts from around the world, including WHO, the Organisation for Economic Co-operation and Development, G8 countries, global Alzheimer’s charities, pharmaceutical organisations and investors, proposed ways to increase investment in dementia as they discussed dementia as an epidemic. Maizie Mears- Owen, Care UK’s head of dementia services, looks at the pledges and how they will affect people living with the condition.
“Everyone involved with dementia, whether as someone living with the condition, their loved one or as a professional carer, was delighted that the London summit took place. It was a tangible first step to carrying out the pledge to cure dementia by 2025, made at the 2013 G8 Dementia Summit.
David Cameron’s pledge to boost dementia research funding to £66m is very welcome, as is the Alzheimer’s Research UK pledge of £100 million over five years.
I was also uplifted by news that the UK is launching the world’s largest study into dementia, involving more than two million people, through the Medical Research Council and their industry partners, and I hope that the study involves qualitative findings about living with the condition because it is important to capture individuals’ experiences.
So much good news came from Thursday’s conference, but I would like to sound a note of caution. I would be the first to acknowledge that a cure or prevention is the very best possible result and research is vital. Research brings with it the added benefit that, while trials are ongoing, they bring hope, especially to those who are caring for loved ones with the condition and who so often fear the disease’s potential legacy.
However, in recent years there has been an increase in interest in a social model of care – a way of helping and supporting those who deal with dementia, so that living good and fulfilling lives with dementia, rather than solely striving to beat it, was seen as the way ahead.
People in the mainstream began looking at the work that had been started on creating dementia friendly communities, free from stigma and fear. Dementia champion and awareness courses, and people, businesses and organisations seeking a basic understanding of the condition, are no longer rare. I firmly believe that, rather than adopting a wholesale to a medical model in our quest for a cure, we need to encourage the two approaches to run in tandem.
There are currently more than 800,000 people living with dementia in the UK and, as Health Minister Jeremy Hunt said at the conference, every four seconds someone in the world is diagnosed with dementia. We need to build an inclusive environment for them and the hundreds of thousands who will acquire the disease in the next decade. It needs to be free from stigma, life-enhancing and responsive to the individual’s needs and personality.
Six months ago, I was delighted when Dennis Gillings was appointed world dementia envoy. So much excellent work is being done around the world and it is crucial that we harness, coordinate and learn from these efforts. I think that his appointment is a key factor in encouraging that.
I spent some time recently at the Dutch dementia community of De Hogeweyk with a group of colleagues from care organisations across Europe. We were all inspired by the community and at Care UK we are incorporating the lessons of using a domestic scale and setting when we create our new-build homes or refurbish our existing homes. We learn many lessons from our own residents too about how changing perception can affect the way they see depth or light or movement from the corner of their eye. We incorporate what we learn into not just our homes but our other services too for example, we have begun, and are looking to expand, our environmental audits and experiential training across our 11 NHS Treatment Centres too.
Something that intrigued me at De Hogeweyk was how the homes reflected peoples’ interest and personalities. We are building communities of interest too. At one home in Humberside we have supported residents to form a choir that are giving performances outside the home including public performances at a theatre. This is uplifting as it not only gives the singers exciting opportunities and fun; it challenges the pre-conceptions of the audiences. I was delighted when I found out that family members were joining in as it was creating new, precious memories as well as strengthen ties and communications.
So important are these relationships that we have created two free books to help relatives and friends – As Easy as ABC – that provides 100 activities created and tested by our activities coordinators and Listen, Talk, Connect – a guide to communication written in conjunction with academics, practitioners and, more importantly residents and their families. Feedback from families and professionals alike has been overwhelmingly positive and anyone can download copies from www.careuk.com
At our Tall Trees home in Colchester the residents’ love of nature and animals has been used to create an incredible programme of activities that sees them regularly visiting local parks, feeding the deer or walking by the beach. All activities that stimulate the senses and promote wellbeing. At another Essex home the residents love of golf led to the team working with the local golf club to create a putting course in the grounds.
So while I am delighted that we are moving towards a cure, I urge everyone in every community to take advantage of the growing groups of dementia champions, support networks and advocacy groups to work towards smashing the barriers of poor communications, lack of empathy and stigma, as charities and politicians work towards breaking the barriers of funding and scientists tackle the technical barriers which keep us from curing this cruellest of diseases.