Ellen McIntosh

Ellen McIntosh

Chicken or egg: should we focus on treatment or diagnosis for dementia?

15 May 2023

family with grandchildren, children and parents walking on the beach

With treatments on the horizon that could completely change how people live with dementia, are we overlooking the first hurdle – diagnosis?

Globally, dementia directly affects 55 million people, and all of the diseases that cause it are progressive and terminal. Every three seconds someone else in the world develops dementia. That’s two people since you started reading this blog.

Let that sink in for a minute.

With a huge proportion of the population living with dementia, headlines announcing the potential of new treatments to slow the condition are very welcome. But are we forgetting the first hurdle of receiving a timely and accurate diagnosis?

 

The diagnosis that one in three of us will receive

Dementia is an umbrella term for a number of diseases that affect a person’s memory, thinking and ability to perform daily activities. The most common cause of dementia is Alzheimer’s disease – a condition that is characterised by the build-up of a toxic protein called amyloid.

Dementia is progressive and terminal. It occurs when damage to the brain cells in affected areas stops them from communicating, ultimately leading them to die. This breakdown in brain cell function causes the symptoms of dementia, such as changes to behaviour, problems with movement and difficulty remembering names, places or recent events.

Each disease that causes dementia can have its own distinct symptoms. For example, people living with dementia with Lewy bodies can have hallucinations, tremors and sleep disturbances, whereas people with frontotemporal dementia typically experience emotional and behavioural changes that include inappropriate behaviour, obsessions and compulsions.

The impact of dementia on the person affected and their loved ones is unique and often incredibly distressing. No one should have to see someone they love change before their eyes and require increasing levels of support. That is why receiving an early diagnosis is so important; it can give people access to treatment and care that can help maintain their quality of life for as long as possible.

Receiving an early diagnosis is important; it can give people access to treatment and care that can help maintain their quality of life for as long as possible.

 

Piecing together the dementia puzzle

Decades of research have brought us to the cusp of having treatments that could slow Alzheimer’s disease or even stop it in its tracks. In the past two years, studies have shown that three promising medications, aducanumab, lecanemab and donanemab, can tackle the toxic proteins that damage brain cells. However, a crucial commonality of these treatments is that they all require an early diagnosis to be effective.

Currently, many people with dementia only receive a diagnosis when they are in the later stages of the disease responsible. This is because the diseases that cause dementia can start to take hold and change the brain up to 20 years before a person has recognisable symptoms. By this time, even if breakthrough medications can help prevent further decline, the existing damage to the brain cannot be undone.

How to confirm a diagnosis before symptoms appear is a challenge that many scientists, medical professionals and charities are working tirelessly to address. Researchers are racing to understand the subtle changes that happen when the cascade of events in the brain first begins.

At the same time, momentum is gathering in improving diagnostics to make detecting these changes possible. In the majority of cases, a diagnosis will be made after a suite of cognitive tests and scans looking at both the structure and function of the brain. Some cases will also involve tests on the cerebrospinal fluid that bathes the brain and contains proteins that can indicate changes in its environment.

We are now edging closer to tests that are less invasive and more accurate. Blood tests are being developed that have enough sensitivity to detect levels of harmful proteins, although they do not yet have the specificity to be a stand-alone test. The use of digital technologies, such as smartwatches and headbands, is also helping researchers develop and understand the fingerprints of dementia.

 

Barriers to diagnosis beyond new advancements

The lack of symptoms in the early stages of dementia is not the only barrier to diagnosis. Societal and personal factors can prevent some people from seeking help.

The stigma around Alzheimer’s disease and other forms of dementia can make people hesitant to consult a doctor, as can a lack of understanding about what dementia is and how it differs from the normal ageing process. In some cultures, dementia is not officially recognised as an illness, so it can be a taboo subject.

There are also barriers at the clinician and system levels. Not all primary care practitioners are trained to recognise dementia symptoms, so people may be dismissed or misdiagnosed with conditions that have similar symptoms. At the system level, there need to be enough specialists to conduct the diagnostic tests, the right infrastructure to provide these tests, and sufficient funding from governments and other decision-makers.

brain scans showing early stages of disease

The diseases that cause dementia can start to take hold and change the brain up to 20 years before a person has recognisable symptoms. By this time, even if breakthrough medications can help prevent further decline, the existing damage to the brain cannot be undone.

 

It’s time to stop working backwards to make progress

We are at a tipping point in changing the whole narrative around and experience of dementia. Treatments are being developed at a rapid rate, and once a successful mass market medication is available, people need to be diagnosed at the right time to benefit from it.

Ultimately, having systems in place to ensure that diagnoses are as early and accurate as possible will allow the most effective treatments to reach people before their disease has progressed too far.

We can no longer wait for people to become symptomatic before we act.

 

The opinions expressed in this blog are those of the author and do not necessarily represent the views of The Health Policy Partnership.
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