‘It’s frustrating for everybody’: the impact of dementia diagnosis delays
Swindon has one of the worst dementia diagnosis rates in England. Figures from NHS England show that less than half of patients (49.7%) with the condition have a formal diagnosis. It means more than 760 people go undiagnosed, which would have been the case if Swindon had had the same diagnosis rates as the average (80%) of the top 10 performing areas.
Avon and Wiltshire Mental Health Partnership NHS Trust, which runs dementia services in Swindon, says the average wait time for memory assessment is nine months, while for patients referred for a brain scan to confirm or rule out the diagnosis, the average wait time is around six is. months.
During a busy Alzheimer’s Society dementia café session, patients and their families describe how difficult it has been to receive the diagnosis. Alan Richardson, 83, underwent cognitive testing and an MRI scan in January 2019 after becoming increasingly forgetful. But then, says his wife Janet, they were in limbo when the pandemic hit. “They told us that Alan suspected Alzheimer’s disease and dementia,” she says, “but we had no formal diagnosis for almost 18 months.”
It took even longer for Andrew Smith to be diagnosed with Alzheimer’s. His wife Doreen says that after visiting the GP in May 2021, it took four months before they got an appointment at the memory clinic. But they had to wait until August 2022 to know the results. All the robberies have significantly deteriorated Andrew’s capacity, she adds. “The problems are not the fault of the staff, who do their best under almost impossible situations. However, I am angry for Andrew’s sake because I know that the delay in prescribing treatment has affected the rate of progression of the disease and we could perhaps have had a better quality of life for longer.”
Alison Porter, a self-employed carer who cares for four dementia patients, says many of the problems are down to staffing and funding. “It’s frustrating for everyone at every stage,” she says. “There are not enough resources and not enough staff, that’s why it’s taking so long.”
To improve diagnosis rates in Swindon, the trust has received £140,000 from the integrated care board to hire new staff next year.
Dave Leveridge, the clinical lead for older people’s community services at Avon and Wiltshire Mental Health Partnership NHS Trust, said: “We know how challenging memory loss can be for everyone involved, and timely diagnosis is really important to help people manage their symptoms. to understand. access essential assistance and plan for the future. We are working very hard to reduce waiting times and increase the overall number of dementia diagnoses in Swindon.”
The memory service has already “significantly increased” the number of diagnostic appointments in the past three months, he added.
The old system of making separate appointments for memory assessment and another for diagnosis has been scrapped. New patients now have one appointment for both assessment and diagnosis. The memory service no longer offers ongoing prescriptions or aftercare, with patients being discharged back to their GP after diagnosis. The idea is that this will free up capacity to diagnose more new patients.
But many visitors to the dementia café say they are concerned about the change. Robert Bright says he was concerned and disappointed when his wife, Betty, who has Alzheimer’s disease and vascular dementia, was discharged to their GP. “The memory clinic staff know more about Betty’s condition and medication than the GP,” he says. “GPs are not experts in the field of dementia.”
And for others, a stumbling block to early diagnosis may be that the patient does not believe he or she is not feeling well. Brian Archer says that although it took more than four months for his wife, Jean, to get an appointment at the memory clinic, the hardest part was convincing her to see a doctor in the first place. “I knew something was wrong, but I couldn’t convince her to go to the doctor because Jean can’t see anything else.”
Some names have been changed