Concern has been raised over the number of people in York who are living with dementia without a formal diagnosis – as some people report waiting years before they are able to get one.
Healthwatch York has sounded the alarm in a new report which examines support for people living with the condition and their carers in York.
Diagnosis waiting times are a “huge issue”, according to Healtwatch research officer Roger Newton, who presented the report to councillors and health leaders at a health and wellbeing board meeting on Wednesday.
He said: “There’s a significant number of people that were telling us there was years of waiting in this limbo of really not really knowing, which is a terrible situation to be in and with no support in that.
“People are talking about years, not weeks or months.”
Public health expert Peter Roderick told the meeting that there was a “diagnosis gap” in dementia care in York.
According to the Healthwatch report, in 2020 it was estimated that there were 2,511 people with dementia aged 65 and over and 79 people with dementia aged under 65 years living in York – but fewer people are actually being diagnosed.
The report states: “The data suggests that compared to England, York has a significantly lower dementia diagnosis rate for people aged 65 and over.
“The amount of people with a dementia diagnosis having their care plans reviewed every 12 months has also decreased between 2019 to 2020 and is also currently lower than the average in England.
“This means that some people living in York are not receiving a dementia diagnosis in a timely way and that some people’s care plans are not being reviewed regularly and kept up to date.”
‘A substantive gap’
Coun Janet Looker said it was important more work was done on dementia care as the problem was only going to increase.
To improve dementia care in York, carers told Healtwatch they wanted to see:
- reduced waiting times and better communication
- a consistent approach to dementia care across the city
- a new service which includes an allocated person to seek support from in the longer term and
- a network of respite and day centres.
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Mr Newton said: “We need to improve waiting times for diagnosis and we need to improve the communication support following that. Patients and people need to know what support is available and they need to understand how it links together.”
The council’s director of safeguarding, Michael Melvin, said the efforts to make York a dementia friendly city had had a positive impact.
He added: “But I would agree there is still a substantive gap, particularly with some of the statutory services we provide, some of the more specialist services and being able to tie that together with the community and voluntary sector.
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“I have had a number of conversations with carers which have been quite difficult because they haven’t been able to access that kind of support. Some people’s loved ones have had to be cared for out of the city which has been very difficult for them.”
The council is currently in the process of producing a dementia strategy to set out how the issue will be tackled in future.