More than half of people with dementia never receive a formal diagnosis and GPs – as well as the public – have a major role to play in improving this figure. Louise Lakey, policy manager at the Alzheimer’s Society, reports:
It was recently estimated that by 2066, there will be more than 500,000 people in the UK aged 100 or over. This forecast from The Office for National Statistics makes it difficult to ignore the fact that we are an ageing population, and the consequences this will have in terms of our nation’s health and quality of life.
For instance, there are currently 800,000 people in the UK living with dementia. The term ‘dementia’ describes a set of symptoms that include loss of memory, mood changes, and problems with communication and reasoning. It mainly affects people over the age of 65 and the likelihood of developing the condition increases with age. The symptoms worsen over time, and there is currently no cure. Because the size of the population is growing and people are living longer, by 2021 it is estimated that there will be more than one million people living with dementia in the UK.
The question is, do we want to live in a country where it is possible for people to grow old well? We assume the answer is yes, and therefore it’s vital that collectively we face up to how we ensure our health and social care system is ready to support and provide for the growing number of people who are going to be affected by dementia.
A lack of diagnosis
Receiving a formal diagnosis of dementia helps people to understand their condition and prepares them, their relatives and friends for how dementia will affect their lives in the future. People can access information, support and apply for benefits that will help with care, as well as drug treatments, which can slow the progression of their dementia. It also allows them to plan for the future, and put their affairs in order.
However, while we know there will be an increase in prevalence of dementia as the population ages, only 43% of people living with the condition in the UK ever receive a diagnosis. This lack of recognition of dementia has dire consequences for those living with the symptoms of a progressive condition that affects many aspects of their life, as they cannot access the support that they need.
Even when people do receive a diagnosis, in many cases it only occurs once people are at the moderate or late stages of dementia, which minimises the opportunities for the care and support that improves quality of life.
A lack of diagnosis or late diagnosis doesn’t make economic sense either. Because people can’t access the care and support they need if they haven’t been told they have dementia, they are more likely to struggle alone until they reach crisis point. This may increase the likelihood of costly early entry into care homes and lengthy stays in hospital.
At the moment, dementia costs the NHS, local authorities and families £23 billion a year. With a rise in prevalence already evident, it is predicted that this will grow to £27 billion by 2018 (King’s Fund, 2008). Studies show that an early diagnosis can save the taxpayer hundreds of thousands of pounds because it can delay someone needing care outside of their own home.
Alzheimer’s Society’s Dementia 2012 report recommended that rates of diagnosis must be increased to two-thirds by 2015 and three-quarters by 2017.
The role of GPs
Diagnosing dementia can be difficult, especially early on when symptoms are less pronounced. While assessment tests, such as the Mini Mental State Examination (MMSE) exist, these have flaws, and only focus on cognitive functioning rather than other symptoms that may be apparent. A recent survey by the Alzheimer’s Society revealed that only 37% of GPs felt that they had received adequate training in diagnosing dementia.
But there are groups working to change this lack of understanding. For example, the All-Party Parliamentary Group (APPG) on Dementia has been running an inquiry into diagnosing dementia. In July, the group published a report that looked at diagnosis rates across the UK and barriers to diagnosis.
One of the APPG’s recommendations was that there should be greater training for GPs in dementia. One way to do this would be via work being progressed by the Royal College of General Practitioners (GPs). Currently, the Royal College of GPs is working on extending medical training from three years to four. Part of their case for extending training is that there isn’t currently enough time to cover the management of some conditions in greater detail. The APPG suggested that in this year there should be a focus on diseases that will affect people in older age – including dementia – in line with the proportion of a GP’s workload.
It is also important that there are adequate specialist dementia diagnostic services – so-called memory clinics – to perform the appropriate scans and tests to confirm a diagnosis of dementia and rule out any other conditions. The APPG also looked at the variability in quality and availability of memory clinics and has called for these services to be accredited to ensure they are of a consistent high quality.
Having said this, it’s important to realise that it isn’t the sole responsibility of health professionals to ensure that people with dementia receive a diagnosis and then access the vital support and care that will help them to live well with the condition. Some people are reticent to visit their GP to ask for advice and share their concerns about memory. When asked what the barriers to diagnosis were, 65% of GPs said that many people with dementia do not come to their doctor with concerns; and 66% said it was because there is a stigma attached to the condition. It should be emphasised that people who are worried about their own or a loved one’s memory should seek help from their GP at the soonest point. Indeed, the APPG has also suggested that there should be greater public awareness of dementia, and greater emphasis on dementia diagnosis in public health messages.
Making Britain dementia friendly
The Alzheimer’s Society is keen to emphasise that delivering change for people with dementia is a joint responsibility, and should be undertaken not only by Government but by everyone.
Part of the problem is the way in which the condition is perceived by others. Dementia 2012 revealed that 44% of people with dementia feel they lost friends after they were diagnosed, while 75% of the general public think society isn’t geared up to deal with the condition.
This is why it’s vital that wider society plays a part in making the UK dementia friendly. Prime Minister David Cameron recently launched his challenge on dementia and Alzheimer’s Society has begun working with Number 10 and key influencers and stakeholders in the UK business industry to develop dementia friendly communities across Britain.
With the number of people living with the condition is increasing, it is vital that dementia is no longer a taboo in society. We need to ensure people are aware of how it affects lives and make sure communities are able to support people who are living with dementia in their area.
The aim of this campaign is to see communities becoming dementia friendly; having a good understanding of what living with dementia is like and to feel equipped to help people with the condition. The hope is that in the future, staff who work in services such as local banks and supermarkets as well as the general public will be willing and able to support people with dementia in their communities.
Recognition and success
To this end, the Alzheimer’s Society is working with the Government and others to raise awareness of dementia and to change what it means to live with dementia in this country. This includes tackling issues that matter to people with dementia, like the ‘dementia tax’.
The ‘dementia tax’ means that every year tens of thousands of families are left to pay all their care costs when other diseases are paid for by the NHS. Despite dementia being a medical condition, most care is provided by social services, which is means tested.
In addition, people with dementia and their families are paying for services that often do not deliver good quality care. The Alzheimer’s Society is working to put an end to a system that doesn’t work for the person with dementia or their carers. We have been fighting to reform the social care system, to bring about a fairer system of funding.
By launching the Prime Minister’s Challenge on Dementia, Cameron proved he’s committed to delivering change by vowing to address the quality of dementia care and increase public understanding of the condition, as well as increasing investment in research.
With four national dementia strategies existing across the UK, it’s promising to see plans in place gearing people up to improve services and support for people with dementia. In addition, more than 100 private and public sector organisations have joined together as part of the Dementia Action Alliance in England, working together to improve the lives of people with dementia.
But the challenge doesn’t stop here. Unfortunately, there are still people in the UK who visit their doctors and aren’t referred for further investigation when they’re worried about their memories. People with dementia are being charged extortionate amounts for care, which isn’t even guaranteed to be good quality.
It needs to be ensured that the public, healthcare professionals and key decision makers understand the implications of an ageing population and ways in which we can ensure people living with dementia now and in the future live well with the condition.
Alzheimer’s Society (2012) Dementia 2012. London: Alzheimer’s Society.
House of Commons All Party Parliamentary Group on Dementia (2012) Unlocking Diagnosis: The key to improving the lives of people with dementia. London
King’s Fund (2008) Paying the Price: The cost of mental health care in England to 2026. London: King’s Fund.
This article first appeared in the July/August 2012 edition of Mental Health Today. For more information on how to subscribe, click here