Why early diagnosis of dementia is important
Dementia is a profoundly life-changing condition and reactions to a diagnosis can range from dismay and deep sadness to anger and despair. But for many people, it can also come as a relief. A diagnosis may well provide long-awaited answers for a failing memory, communication problems and changes in behaviour.
An early diagnosis opens the door to future care and treatment. It helps people to plan ahead while they are still able to make important decisions on their care and support needs and on financial and legal matters. It also helps them and their families to receive practical information, advice and guidance as they face new challenges.
Talking about being diagnosed with dementia at the age of 50, Norman McNamara (known as Norrms) says on his YouTube video:
Being diagnosed with something like this absolutely devastates you, but for me diagnosis – and this is going to sound really strange – was probably the best news I had at the time. Because... I thought I was losing my mind. I thought there was a conspiracy against me. I was right and everybody else was wrong.
An early diagnosis of dementia is so, so important. Once diagnosed, I knew what I was up against. As they say: know your enemy. If I hadn’t been diagnosed early and I hadn’t been seen by consultants on a regular basis, I wouldn’t be as well as I am today. I don’t know what my future holds, but at least I’m prepared for it.’
Impact of a diagnosis
A major report on the benefits of early diagnosis shows that a diagnosis is often greeted with severe shock, with feelings of disbelief, anger, loss and grief (ADI 2011). However, a diagnosis is often regarded by those with dementia and family members as a ‘positive event’, particularly when the initial shock has worn off. Critically, the response to a diagnosis depends on how a person with dementia is told about it – and the level of support that is available to them and their families after diagnosis.
It is therefore important for the person with dementia and their family to receive the dementia diagnosis in a positive way, with time made available to answer any questions and for support and reassurance to be provided. This is more likely to lead to the individual feeling more in control and empowered to make decisions.
Benefits of diagnosis
An early diagnosis – and access to the right services and support – can help people take control of their condition, plan for the future and live well with dementia. It will help to eliminate the possibility of other, potentially treatable, conditions with dementia-like symptoms being responsible for memory, communication, behaviour and other problems.
It can help people with dementia to have access to relevant information, resources and support, make the most of their abilities and potentially benefit from drug and non-drug treatments available. An early diagnosis gives someone the chance to explain to family and friends the changes happening in their life. On a practical level, a person with dementia may have the opportunity to review their financial situation and discuss with family or legal experts making arrangements for a lasting power of attorney or an advance decision (see Making decisions).
There is strong evidence that an early diagnosis helps someone with dementia to continue to live independently in their own home for longer. This helps to avoid early or unnecessary admission to a care home or hospital, enhancing the quality of life for people with dementia and carers and providing substantial savings on long-term care costs. Drug and non-drug treatment can be more effective the earlier someone is diagnosed.
On the healthtalk website, one carer describes why it was actually a help to have the diagnosis of Alzheimer’s disease confirmed:
I suppose it really just made me accept that what I’d feared as the worst was actually the worst. That there was no doubt anymore if it was dementia and it was a progressive situation. And although it was upsetting it was calming in a way because you couldn't kid yourself any longer.
Why it’s important to know the type of dementia
While no two people have the same experience of dementia, identifying the type of dementia in individuals helps families, carers and care workers to provide the right care and support. If we were given a diagnosis of cancer, we would expect to know what type we have so that the best possible treatment and management programmes can be put in place. It is no different for people with dementia.
As a simple illustration of the differences, someone with Alzheimer’s disease or vascular dementia would expect to experience memory and communication problems while a person with fronto-temporal lobe dementia would be more likely to show changes in personality rather than memory. Consequently, this could well involve a different approach to care and support provided.
Why people may not want a diagnosis
A survey carried out by YouGov in 2011 revealed that dementia is people’s biggest fear in later life – ahead of cancer and any other illnesses (ARUK 2011). Concerns over the impact on their daily lives – particularly their jobs, social lives and ability to drive – mean that some people showing early signs of dementia choose to not seek a diagnosis.
The benefits of an early diagnosis far outweigh these fears – a person showing symptoms of dementia may in fact be suffering from a treatable condition, and someone with dementia can only have access to the right care and support after diagnosis.
Norman McNamara again, talking about being diagnosed with dementia at the age of 50, says:
It is very hard sometimes for people to accept they have got dementia because of the stigma with it and connected to it. But if you had a pain in your back or in your chest, or a throb in your legs or your feet and you didn’t know what it was, you would go to a doctor. Yet, with dementia, people seem to shy away from it. But knowing what’s wrong with you is so important. You can’t hide away from it.This is available to view on YouTube.
Access and download additional resources
Further reading Open
Alzheimer's Disease International (2011) World Alzheimer report 2011: The benefits of early diagnosis and intervention. London: ADI.
Alzheimer's Society (2012) 'After a diagnosis'. Factsheet 471. London: Alzheimer's Society.
Alzheimer's Society 'Getting diagnosed with dementia'. Watch this video on YouTube telling the story of Christine, who was diagnosed with Alzheimer's disease, and her daughter Jennifer-Rose. The pair discuss the impact that a delayed diagnosis had on their lives, and how important it was for Christine to stay in work after the diagnosis.
Alzheimer's Society: The society's 'Worried about your memory?' campaign has run since 2008. It aims to raise awareness about dementia and encourage people who are worried about their memory to seek help from their GP. The campaign comes with a leaflet, translated into 13 languages, giving examples of early signs of dementia and a video promoting the need to recognise early signs and take action.
Healthtalkonline website: This website contains stories from 31 carers of people with dementia, some presented in videos, some in audio recordings. The stories cover a wide range of areas, including recognising the early signs of dementia and getting a diagnosis. The stories were recorded as part of research into patient experiences led by experts at the University of Oxford.
Useful links Open
The Alzheimer’s Society produces over 80 factsheets on all sorts of topics related to dementia, including many that relate to early signs and diagnosis, including Risk factors for dementia (450), Assessment and diagnosis (426), After a diagnosis (471), and The progression of Alzheimer’s disease and other dementias (458).
The healthtalk website contains stories from 31 carers of people with dementia, some presented in videos, some in audio recordings. The stories cover a wide range of areas, including recognising the early signs of dementia and getting the diagnosis.
NHS Choices describes itself as the ‘online front door to the NHS’. It is the UK’s biggest health website and includes an A–Z of health conditions, including dementia, as well as explaining about treatments and how the health system works. The Dementia Guide on this site includes a section on Getting a dementia diagnosis, Benefits of early dementia diagnosis, and What to do if you’ve just been diagnosed with dementia.
Unlocking diagnosis: The key to improving the lives of people with dementia.
This All-Party Parliamentary Group of Dementia publication reports on the APPG’s 2012 inquiry into differing diagnosis rates – and the barriers for lifting these – around the UK.
World Alzheimer Report 2011: The benefits of early diagnosis and intervention
The Alzheimer’s Disease International 2011 report investigated the benefits and disadvantages of early diagnosis and intervention for people with dementia, the implications of early diagnosis for health and social care costs, and best practice in early intervention around the world.
Related pages from this section Open