Disparity in dementia diagnosis across Northern Ireland
Figures mapping out where people have been diagnosed with dementia throughout Northern Ireland have identified gaps where many may be going untreated.
Dementia is a disease that normally affects older members of the population and symptoms can include memory loss and difficulties with thinking, problem-solving or language. Photograph: Thinkstock
Government data drawn from every GP practice in Northern Ireland has been analysed by the Belfast-based news and analysis website The Detail, showing a wide variation in the number of people diagnosed with dementia. The figures show that across Northern Ireland as a whole, 16 patients per 1,000 aged 45 or over are listed by their GP as having some form of dementia. While some practices are well above the Northern Ireland rate, others have very few, or no patients at all diagnosed with the disease, adding weight to the fear that thousands with the condition are not being diagnosed and are therefore living without treatment.
Dementia is a disease that normally affects older members of the population and symptoms can include memory loss and difficulties with thinking, problem-solving or language. This is the first time the official data has been presented in this way for Northern Ireland. Experts have attributed the disparity in diagnosis to a lack of specialist services in some areas, as well as a failure by some GPs to make appropriate referrals. But the Royal College of GPs has said a stigma around dementia could also be preventing people from seeking a formal diagnosis.
Reacting to the figures, one of the Northern Ireland health service’s leading officials in dementia care said the research should be a motivating factor to improve diagnosis rates. Seamus McErlean is the commissioning lead for Older People and Adult Services at the Health and Social Care Board. He believes the key is assuring people that there is an infrastructure there to support people after a dementia diagnosis. Mr McErlean said: "We have to start the conversation now and it’s about encouraging people to come forward and talk to their GPs if they have fear or concerns about their memory. Part of that is also about ensuring people that we have the infrastructure there to help them if they do get a diagnosis.
“The figures contained in the map are useful and if anything I think it spurs us on to reach those who do not have a diagnosis. Certainly it will be interesting a few years down the line to revisit these figures because I believe we are making strides in terms of diagnosis.”
Through its Qualities and Outcomes Framework (QOF) data, the government keeps a complete list of everyone in Northern Ireland registered with a GP who has been diagnosed with dementia. It takes into account all people diagnosed with dementia either directly by a GP or through referral to secondary care.
The 2012/13 QOF data identifies 12,278 people diagnosed with dementia in Northern Ireland as of March 31 2013. Using this data The Detail created an interactive map showing the number of people diagnosed in each of the 351 individual GP practices throughout the north.
The website requested a separate breakdown from the Health and Social Care Board for the number of patients registered with each practice and also how many of these patients were aged 45 or over, as of January 2014. Using these figures it calculated the dementia diagnosis rate in each practice per 1,000 patients aged 45 or over. The colours on the map correlate to this calculation. The calculation shows that this ranges from 50 patients per 1,000 aged 45 or over diagnosed with dementia in practices in Antrim, to less than 10 patients in some GP practices in Fermanagh.
There are many different types of dementia but they all affect how the brain works and can have a massive impact on quality of life. Alzheimer’s is the most well known manifestation of the disease. Bernadine McCrory¸ director of Alzheimer’s Society Northern Ireland, said that urban areas with higher density populations will have more access to specialist treatment which will impact on diagnosis rates. She said: “What you also have to consider when looking at the map is the practical differences between urban and rural areas. In rural areas there is generally not the same level of infrastructure in terms of transport to facilitate people to get to appointments which could have also an impact on the figures.
“Also in rural areas you are much more likely to have extended families living with each other – sometime two or three generations. This leads to a type of informal care which means people within that family circle might not feel that there is the same need to go and get a formal diagnosis.”
In response to the analysis of the rates of diagnosis the Department of Health said it recognised there was scope for improvement but said the rates would be affected by general population characteristics.
A Departmental spokesman said: “The Northern Ireland Statistics and Research Agency (NISRA) 2012 population figures indicate that there are 30% more people aged 65 or over in the South Eastern Trust than in the Western Trust. As dementia prevalence rates increase with age, it would be expected that the prevalence rate of dementia would be greater in areas with an older population.”
The Detail’s analysis shows that, even taking into account the age profile and size of each practice, there are still wide variations in the number of people diagnosed with dementia in GP practices across Northern Ireland. In the Northern Trust there are over 30 GP practices where the number of people registered with dementia is below the Northern Ireland diagnosis rate of 16 people per 1000 patients over the age of 45. In a statement the Northern Trust said it acknowledged that diagnosis rates in its catchment area “needed to be further improved” and said it was committed to timely diagnosis and quality of care in dementia.