Disparity in dementia diagnosis across Northern Ireland

View Number of people with dementia by GP practice in a full screen map

Figures mapping out where people have been diagnosed with dementia throughout Northern Ireland have identified gaps where many may be going untreated.

Our analysis of government data drawn from every GP practice in Northern Ireland shows there is a wide variation in the number of people diagnosed with dementia.

The figures reveal 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.

Data relating to each GP practice can be accessed in the interactive map above. This is the first time the official data has been visualised in this way for Northern Ireland.

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.

Experts have attributed the disparity in diagnosis to a lack of specialist services in some areas, as well as a failure of some GPs to make appropriate referrals. But doctors’ representatives have said the stigma around dementia could also be preventing people from seeking a formal diagnosis.

Dr John O’Kelly, chair of the Royal College of GPs in Northern Ireland, acknowledged the “increasing challenge” of diagnosing and caring for people with dementia.

“Symptoms are often non specific and present slowly and gradually. Often patients have multiple co-morbidities that can cloud the picture," he said.

“The map showing variation in the rates of diagnosis of dementia is interesting and difficult to explain. It would suggest that further research is required to establish the reasons. Certainly good and timely access to appropriate secondary services is essential.”

In statements issued to The Detail a number of health and social care trusts said that while diagnosis numbers could be improved, they stated that the difficulty is not accessing services but instead a lack of awareness from the public for the need of an early diagnosis.

Meanwhile one of the health service’s leading officials in dementia care said the figures reported on by The Detail today 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.

“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."

We can also confirm today that new funding for dementia is being sought as part of the Northern Ireland Executive’s Delivering Social Change Signature Programme.

As previously reported by in November 2011 the Health Minister, Edwin Poots, published a regional dementia strategy – a road map of how to improve dementia care and awareness.

Initially the minister said he had hoped to allocate between £6 million and £8 million to the programme over three years. To date the strategy has only received £3 million from the Health and Social Care Board (HSCB) and the Public Health Agency has also committed to invest £1 million in dementia research.

In a statement to The Detail the department said these figures in “isolation do not represent the totality of investment in services”. For example, in 2012/13, over £700 million was spent on health and social care for older people on services such as residential, nursing and domiciliary care which people with dementia also benefit from.

The Detail understands that new funding is also being sought through the Delivering Social Change Programme for a number of dementia projects over the next three years, including a dementia public awareness campaign and investment in respite care.

A spokesman from the Department of Health said: “Discussions on the level of funding for the dementia projects are ongoing between DHSSPS and co-funders. DHSSPS will be happy to confirm funding once commitment letters are in place.”

“A LIFELIMITING CONDITION”

Dementia is an umbrella term used to refer to a collection of symptoms which can result from a number of different diseases of the brain.

Symptoms can include a decline in memory, reasoning and communication skills and a gradual inability to carry out everyday activities.

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.

The Alzheimer’s Society’s October 2013 study ‘Mapping the Dementia Gap’ took the actual number of people diagnosed with dementia across the UK and used aged standardised prevalence rates to estimate the number of people who were undiagnosed.

The study concluded that there were just over 7,000 people undiagnosed in Northern Ireland with a diagnosis rate of 63.2% which is just marginally below Scotland (64.4%) and well above the UK average of 46%.

Bernadine McCrory is director of Alzheimer’s Society Northern Ireland. She stressed the need to improve the diagnosis rates.

She said: “If you consider any other life limiting conditions, for example cancer or any of the other degenerative diseases, what other disease group would find it acceptable for almost 40% of the group not to get a diagnosis?

“That’s exactly what dementia is. It’s a life limiting condition and there is no cure.”

People can receive a dementia diagnosis by either going to their GP or a GP can refer them to a specialist for assessment.

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 Northern Ireland.

We 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 we 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.

Our 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.

In response to our analysis the Department of Health said it recognised there was scope for improving diagnosis 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.”

Our 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 to The Detail 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

The trust said it plans to roll out a dedicated dementia assessment service to all areas of the trust by the end of 2014 in an attempt to tackle the stigma that surrounds diagnosis.

Bernadine McCrory 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.

“If you think of somebody in rural Rosslea and then compare that to somebody who can get the Metro line link in Belfast, this will have an impact on people being able to go out and get to an appointment.

“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.”

THENEED TO IMPROVEDIAGNOSIS

A survey carried out as part of a Department of Health performance review in 2005 found that less than half of all of the GPs surveyed thought they had enough training to diagnose and manage dementia.

Department guidelines state that those suspected of having dementia should be referred for specialist assessment.

GPs are generally the first port of call for people worried about their health and the dementia strategy document found that GPs are still making a diagnosis of dementia for some people.

Dr John O’Kelly, chair of the Royal College of GPs in Northern Ireland, said the organisation recognised the increasing challenge of diagnosing and caring for people with dementia.

He said: “Symptoms are often non specific and present slowly and gradually. Often patients have multiple co-morbidities that can cloud the picture.

“The map showing variation in the rates of diagnosis of dementia is interesting and difficult to explain. It would suggest that further research is required to establish the reasons. Certainly good and timely access to appropriate secondary services is essential.”

Peter Passmore is Professor of Ageing and Geriatric Medicine at Queen’s University in Belfast. He believes diagnosis is heavily influenced by a GP’s ability to refer a patient to specialist secondary care services for diagnosis.

He said: “GPs are not comfortable with making a diagnosis of dementia. The average GP will have small numbers of people with dementia on their list and see these situations infrequently.

“It’s a complex area but diagnosis rates largely depend on GP referral and availability of secondary care services where a diagnosis is usually made. It is only then that a GP will usually log the diagnosis.”

DEMENTIADATA “SPURS US ON”

There are a number of specialised memory assessment clinics throughout Northern Ireland which a GP can make a referral to. The clinics are for people who are experiencing early stage memory loss symptoms where there are concerns that the individual may have dementia.

The clinics are meant to improve the chance of people receiving a timely diagnosis.

In the Western Trust a memory assessment service has been operating within the Limavady, Derry and Strabane areas since April 2009.

Despite this, The Detail’s map shows that these areas still have a high proportion of 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.

The Western Trust confirmed that 92% of the referrals to its memory assessment service come from GPs. In a statement issued to The Detail the trust said it believed the difficulty was therefore not in accessing services but in a lack of awareness of the need for diagnosis in the general population.

A spokesperson said: “The trust acknowledges that there are still a number of people living with dementia who have not yet received a diagnosis. Research would indicate that this may be caused by a lack of public awareness about the condition, stigma and delay in people seeking help from their GPs.”

Seamus McErlean, the commissioning lead for Older People and Adult Services at the Health and Social Care Board, said the figures published today should encourage debate on the need for early diagnosis.

He said: "A number of years ago there was a stigma around cancer and people didn’t want to talk about it. They referred to it as ‘the big C’. As we started to see that some cancers can be cured and people are living longer and having a better quality of life, that stigma has reduced. People are much more open about talking about cancer now.

“I think it will be a while before we get to that stage with dementia but 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.”