Dealing with the fear factor around dementia

Opinion: why do we delay seeking a diagnosis for changes in cognitive and thinking abilities in ourselves and others?

Dementia is one of the most feared conditions of our time. Many polls have suggested that people fear dementia more than death. Despite this, and the increasing prevalence of dementia worldwide, public knowledge about dementia is poor and there remains a lot of uncertainty about what dementia actually is.

People regularly ask "what is the difference between Alzheimer's disease and dementia?" Dementia is an umbrella term to describe symptoms such as memory loss and difficulties with thinking, problem solving and language that result from physical damage to the brain and Alzheimer’s disease is the most common form. There are many other subtypes of dementia including vascular dementia (that affects blood vessels in the brain) and Lewy body dementia (associated with fluctuating cognitive abilities).

The most important risk factor for dementia is increasing age, but it can also affect younger people. Rather unhelpfully, there is a public perception that significant memory decline is an inevitable consequence of ageing. Many of us talk conversationally of people "doting" and this label is applied in an entirely subjective way.

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In my experience, it has been used to describe both a granny who called someone the name of every grandchild before getting to the right one and a grandad who doesn't know the day or season. In this example, Granny’s memory deficits are likely an occasional occurrence, and an annoying consequence of normal ageing on brain function. Grandad’s symptoms are likely to significantly impact on daily living, a key factor associated with the diagnostic label of dementia.

I am both a dementia researcher and a granddaughter with lived experience of this devastating condition, who wants to better understand dementia and the factors that influence its onset and progression. In my research and experience, it is clear that patients and their families delay seeking a diagnosis.

But why do we so often fail to challenge changes in cognitive and thinking abilities in ourselves and others in the way we would other common medical conditions? The benefits of early intervention in dementia are clear, and mean that patients can access treatments, advice and support to plan ahead. Critically, if a new disease modifying treatment were to become available, patients would benefit most if they started treatment as early as possible.

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The first delays in seeking a diagnosis are related to the individual who develops dementia and their family. Perhaps they themselves have noticed changes in their capacity for thinking, problem solving or memory and choose not to act on it because of fear or embarrassment? When we begin to notice changes in a loved one, human nature is to try to rationalise and explain them away. We may think our loved one is tired or getting over a physical illness or are depressed. We may even gradually shift our thinking about what is "normal" for them. This is problematic because time passes quickly and insidious month-by-month changes can mean that cognitive deficits begin to affect daily living within six months to a year.

The next point for delay is upon presenting to a GP. Delays here may be due to fear of having a difficult conversation around the issue. The person affected may deny there is a problem and further defer presenting to a healthcare professional. GPs have an important role to play as the first point of contact for those with memory complaints, though many GPs acknowledge that they themselves do not have sufficient knowledge about dementia.

GPs can rule out potentially reversible causes for dementia-like symptoms such as vitamin B12 deficiency, depression and thyroid disturbances and will assess vision and hearing as well as conduct brief cognitive assessments. When concern is warranted, they will refer to specialist clinics. Anecdotally, some GPs have taken a paternalistic approach to the diagnosis of cognitive complaints in long-standing patients, failing to recognise the benefits of a diagnosis. Thankfully, this is not commonplace.

From RTÉ Radio 1's Let's Talk Dementia, Fionnuala Sweeney looks at every aspect of dementia, from diagnosis, to carers, to end of life care

Once a referral to a specialist clinic is made, it is common to have delays in assessment and feedback due to increasing numbers of patients. In many cases, years can pass from noticing a problem to receiving a diagnosis and we need to change this.

Historically, funding for dementia research has been significantly lower than for diseases such as cancer, despite the fact that the cost of dementia is more than heart disease and cancer combined. Dementia deserves funding so that we can prevent the devastation it causes. As a society, we need to educate ourselves about dementia and embrace research to better understand it and identify new treatments.

From RTÉ Radio 1's Today With Sean O'Rourke show, Michelle McDonagh talks about the experience of her family caring for her father who was diagnosed with dementia

We need to change perceptions, and recognise that those with dementia can meaningfully contribute to society and, if we diagnose early, can live independently for longer. We need to take control of our own risk. Although we cannot control our genetic susceptibility to dementia, we are in control of many modifiable risk factors associated with its development. Following a healthy lifestyle and keeping socially engaged goes a long way in reducing risk. We need to know that we can all help in the fight against dementia by participating in research and increasing awareness.

The views expressed here are those of the author and do not represent or reflect the views of RTÉ

Dealing with the fear factor around dementia

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Paula McClean