People with dementia are facing shocking variations in the time it takes for them to receive a diagnosis, an influential group of MPs and peers revealed today. ‘Unlocking Diagnosis: The key to improving the lives of people with dementia’, a report by the All-Party Parliamentary Group on Dementia (APPG), found waiting times for memory services – a key component of the diagnosis process – varied from just a few weeks to over a year. The average wait was reported to be at least three months. The APPG is calling for improvement of these services, with more investment, compulsory accreditation and better accountability to raise standards across the UK.
Memory services are supposed to act as a one-stop shop, offering a comprehensive assessment to determine whether someone has dementia. However, this report found there is huge inconsistency in the quality and availability of these services. Delaying diagnosis means people with dementia are not given access to support, information and treatments which could help maintain their quality of life.
Pulling together 1,100 pieces of evidence from people with dementia, carers, families, GPs and other health professionals, the report looks at the entire process of dementia diagnosis. Other key recommendations include:
- Investing in a public dementia awareness campaign
- Making rates of diagnosis a priority for public health directors
- Improving support for people following a diagnosis of dementia
Baroness Sally Greengross OBE, Chair of the APPG on Dementia, said:
We urgently need to make early diagnosis for people with dementia a priority and memory services are a key part of this. The Prime Minister has recently acknowledged the importance of improving quality of care for people with the condition, but there is still a lot of work to be done. Improving diagnosis rates will mean more people with dementia being able to access support and treatment that can help them and their family achieve the best possible quality of life.’
Almost 60 per cent of the 800,000 people living with dementia in the UK never receive a diagnosis. ‘Unlocking Diagnosis’ identifies the main barriers as lack of public and GP awareness and the variability of memory services.
Brigid Stubbs, from Surrey, who spoke to the inquiry after she struggled for years to get a diagnosis for her husband Paul, said:
It took five years for Paul to finally get a diagnosis of Alzheimer’s disease. He originally visited his GP in June 2007, and was misdiagnosed with depression with ‘dementia-like’ symptoms and put on anti-depressants.
‘Having gone back and fourth to different consultants and psychiatrists over the years, it was only in Spring of last year that he finally received a diagnosis. I feel very sad that this took so long. His symptoms have worsened over the years and his quality of life will never be what it could have been if he’d been given a diagnosis when he first visited his GP.’
There is also a financial incentive for increasing diagnosis rates. It is estimated that commissioning better memory services to provide early diagnosis and intervention would save £245million* within ten years.
Taking the work of the APPG forward, Alzheimer’s Society is now beginning a project to gather evidence to establish an even more comprehensive national picture on memory services. The Society is encouraging MPs to write to their local PCTs to find out how well they are serving the needs of people with dementia in their areas.
Jeremy Hughes, Chief Executive of Alzheimer’s Society, said:
‘What we are hearing today is that many people are being let down by services that are meant to be helping them get a timely dementia diagnosis. Now we need MPs to get in contact with local health services and GPs to help us find out exactly what is happening at a local level across the UK and to collect the data we need which is vital for pushing forward change.
‘Through compulsory accreditation and investment in improving memory services we can help drive up rates of diagnosis and enable people with dementia to access the support they need. By ensuring people have the support they need at the time they need it we can also save money, as fewer people will need costly and distressing crisis care.’