Making dementia a priority at a local level – putting lived experience at the heart is the key
Real and lasting change is urgently needed for people living with dementia, the UK’s biggest killer.
It will take all of us to come together to make this change happen and at an event I attended recently London showed how it has been taking steps to create innovative collaborations to make a difference day in day out to those affected by dementia.
Most of my clinical career was spent in the capital so I’ve a special affection for the city, and the vibrant, diverse communities who live there.
Over the last five years a project in London - a partnership between Alzheimer’s Society and Greater London Authority - has been working towards making the capital a better place for people living with dementia. Dementia Friendly London was conceived in 2018 after Mayor of London Sadiq Khan announced that he wanted London to become the first dementia friendly city in the world. A vision where people living with dementia can travel freely, feel part of their community and be confident that they can partake in everything the city has to offer, from arts and culture to leisure, shopping, and other activities.
Meeting a collective challenge
The event I attended celebrated the legacy of this project and we heard how, under the umbrella of Dementia Friendly London, partners from many sectors and communities had come together to meet this collective challenge.
There was no doubt that collaboration was key, and I was struck by the breadth of partners and communities who had come together to share, learn, and make a difference to those affected by dementia. From the NHS, Local Borough Councils, Transport for London, Metropolitan Police to housing, arts venues, and private companies – all were united in ensuring that those affected by dementia could continue to live meaningful, enriched lives in the communities they call home.
A packed crowd heard from many of our brilliant partners, such as the NHS London Dementia Clinical Network who are leading work on improving the diagnosis pathway and Resonate Arts who have led a ‘mystery shopper’ approach to support cultural venues be as inclusive as possible for those living with dementia. All were putting those affected by dementia at the heart of their work, ensuring that these voices were truly heard.
Involvement
The focus on meaningful, sustainable involvement of those affected by dementia was perhaps the theme of the day and it was wonderful to hear from the People’s Panel and how their passion for improving the city will continue beyond Dementia Friendly London. This project has proven there is power in trusting those with lived experience to inform meaningful change. Too often, involvement is portrayed as a ‘good thing’ to do, a ‘tick-box’ exercise, but if done carefully with true compassion, deep listening, understanding and empathy it can create lasting change.
Dementia Friendly London has created real and tangible changes for people living with dementia and the will is there to continue doing so. There has been a concerted effort to look at this holistically from spaces to places, within policies and within major sectors. It is now up to those with power in London to ensure that this legacy is built upon.
It begins with diagnosis
The key to improving the lives of people living with dementia begins with diagnosis.
Diagnosis means access to care, treatment, and support. It means knowing what condition you have and being able to plan for the future.
Yet diagnosis rates vary across the city. In Croydon, the dementia diagnosis rate is 78.0% yet in Newham just 54.1% of people living with dementia get a diagnosis.*
Dementia Friendly London has shown us that by working pan-London great things can be achieved. For the five Integrated Care Boards (known as ICSs) responsible for health and social care in London I would urge them to mirror that collaboration. They of course need to focus on their own places and those unique needs but should work together as a city towards a collective ambition for dementia.
Yet again the key will be to involve the real experts – people living with dementia. Trust them to help you create lasting change because they live it day after day. By working together every one of us interested in change can make dementia the priority it needs to be.
*NHS Digital December 2023
