People over the age of 55 fear getting dementia more than any other condition. They fear it more than cancer, heart disease, or any other diseases that more commonly affect older people. Dementia can devastate families, upending retirement plans and placing a huge burden on families and carers.
It doesn’t have to be like this - but sadly the reality is that too many people don’t live well with dementia, and too many families are struggling to get by without the support they need.
For many people living with dementia the struggle begins with getting a diagnosis. At the time of the election next year there will be 850,000 people with dementia living in the UK - but only half of them will have a formal diagnosis.
While there are great examples of dementia care in the UK and good GPs who provide an excellent service, there is unacceptable regional variation. In some parts of the country diagnosis rates are above 70%, while others barely reach 40%. The commitment by this government to raise diagnosis rates to an average of 66% by March 2015 is laudable, but we must not stop there. No one with dementia should have to struggle with the intrusive, disorienting symptoms of the condition alone.
There is also much to be done to improve access to support for people with a dementia diagnosis. Our health system can be truly fantastic at caring for people with cancer and other diseases, offering counselling, support groups and specialist nursing. Yet I still hear of many instances where the only offer of support someone with dementia is given is a repeat appointment with their GP every six months. This simply isn’t good enough.
Right to Knowcampaign aims to tackle these twin problems head on, ensuring more people get the diagnosis they need and improving the support available afterwards. We are calling for everyone diagnosed with dementia to have access to a Dementia Adviser or Support Worker so that no one has to face the condition alone. Our petition on Change.org was started by Shelagh Robinson who compares receiving her dementia diagnosis to being told she had tonsillitis. She was with the doctor for less than five minutes when the news was delivered and was given no support and limited information.
The experiences of the thousands of people who have already signed the petition speak volumes:
“Support and information is very difficult to obtain. We feel as if we are on our own to cope the best way we can. A complete nightmare for us and unfair on my mother.”
“My husband has Alzheimer’s and has felt very alone without the support he needs, as though he has been put aside and is not a relevant person anymore.”
“It took over two years for my Mother to get a diagnosis for her Alzheimer's, even when all the family knew there was something wrong. We have had to fight for all the care she now receives.”
225,000 in the UK develop dementia every year – which is the equivalent to one person every three minutes. But dementia and despair don’t have to go hand-in-hand. People with the condition tell us that with the right information and support they can live well, but it needs to be much more forthcoming. Everyone with dementia has a Right to Know – and a right to support during some of the toughest moments of their lives.
The inescapable truth is that dementia will soon touch every family in the land - we need our health and social care services to be ready for it.