The answer, in short, to that question is everyone who has dementia. Dementia is now the biggest reason for deaths in the UK and there will be an estimated one million people living with dementia by 2025. In the Dartford, Gravesend and Swanley area it is estimated that over 3,000 people are living with dementia, but the diagnosis rate is still woefully low at 56.5%. This is well below the NHS target and well below the Kent average.
There are a host of reasons why diagnosis rates in the area are so low, social, economic, ethnicity and race, stigma etc are all factors that affect whether someone will be able to get a diagnosis. However, in 2020 it is simply not acceptable that people live with a long-term, progressive disease and do not know about it. If this was the case for other long-term diseases there would be an outrage; and so there should be about the low diagnosis rates for people who have dementia.
All too often we hear people say about someone without a diagnosis “they don’t want a diagnosis”. No, who would want a diagnosis of any long-term disease, especially dementia which is the most feared of all? However, if we allow people living with dementia to go undiagnosed, we deny them their rights. Their right to plan for their future, their right to access medical treatment and medication, their right to understand their condition, their right to access support and care and in some cases their right to have that care paid for.
If people are not diagnosed with dementia, they are far more likely to live with fear and anxiety and far less likely to access the support they need. We see day in day out the difference that we as a charity make to people’s lives but people who do not know they have dementia will be unlikely to come to our door for help. All too often this will only happen when someone is at crisis point and they and their families do not know where else to turn.
As part of a pioneering piece of work that our Dementia Support team are doing with the NHS local care Multi-Disciplinary teams we have been asked to ensure people have a diagnosis and challenge the GP to ensure this happens. We gladly take on this role, as there are very few cases where getting an appropriate diagnosis is not in someone’s best interest.
However, every one of us can have a part in this. No matter what our role within Alzheimer’s and Dementia Support Services we can challenge the terrible inequalities that people living with dementia face when getting a diagnosis. Talking to people about the importance of diagnosis, raising it with your own GP or patient participation group and writing to your MP are just some of the ways you can help improve the chances of people getting the diagnosis they are entitled to, the diagnosis that affords them their rights and the diagnosis that is so key to them being able to live the best possible life and have their aspirations and needs understood.