Dementia – perception is not the reality

How do you find out what the UK thinks about dementia? Over the past year or so we’ve undertaken research with families affected by dementia, thousands of our supporters and the public to get a better grasp on how dementia is perceived. It’s important for us to do this as a charity – we can’t afford to operate in a bubble. If we don’t understand in detail the level and depth of public awareness of dementia, we won’t be able to communicate effectively with people or help to educate and address misconceptions.

Trying to get the pulse of the nation is no easy task, but we have a few tools available to gain insight into the national consciousness. Qualitative analysis is one such tool, and this means bringing together groups of people with and without experience of dementia and talking to them in detail. As far as possible we mixed up the groups to include men and women of various ages from across the country and with a variety of ethnic and socio-economic backgrounds.

These groups helped us get a snapshot of how people understand dementia today. Having worked in the field now for around seven years, I’ll admit I wasn’t expecting to be surprised by much. I was wrong.

Pause for thought

Across the groups – regardless of their make-up – north, south, east, west – we made a consistent observation that has given us pause. In the main, the groups didn’t recognise that dementia was caused by diseases – like Alzheimer’s – in the brain. They didn’t think about Alzheimer’s in the same way they thought about cancer. To be reductive, they didn’t think Alzheimer’s was a “physical disease”. The obvious follow-on question to ask is “what is it then?” A variety of answers are offered here: a part of ageing, just getting old, crossed wires, forgetfulness, but evidently people don’t feel these symptoms are disease-driven.

As this was such a common response, we wanted to determine how indicative it was of the general population. To do this, we worked with YouGov to carry out a quantitative poll featuring some 2200 participants from across UK society. It’s as close as we can get to being nationally representative without contacting everyone in the phone book. We simply asked “what do you think dementia is?” In response, only 23% recognised it was caused by brain diseases, leaving a huge majority believing something else to be going on. Responses, echoing our groups, included: lack of brain capacity, lapses in memory and mind loss.

This misunderstanding around the physicality of the diseases that cause dementia – Alzheimer’s is most common – might be a key area to address in the ongoing battle to address stigma. If we can help people understand that we are dealing with aggressive and physical diseases, and not “dottiness” or natural decline, it might help emancipate people to seek and talk about a diagnosis. There should not be shame in having these diseases, in the same way we don’t shame people with cancer or heart disease. Chris Graham’s story this week serves as reminder of how destructive Alzheimer’s can be, but his response to his diagnosis and willingness to speak out are a powerful assault on stigma.

Alzheimer’s is incredibly physical, killing off cells in the brain and leaving only a void behind. A brain affected by Alzheimer’s shrinks at 400% the rate of normal ageing, and can be 140g lighter than a non-diseased brain after death – about the weight of an orange. These arresting statistics took our groups by surprise, and served very quickly to get them thinking about Alzheimer’s in the same way as cancer – a physical process that we can seek to disrupt or halt.

Terminology, fear and the fightback

In truth the terminology around dementia doesn’t help us. Dementia is often referred to as a disease in itself, which isn’t quite right. Dementia refers to a range of symptoms including serious memory loss, problems with communication and orientation and a range of behavioural and emotional issues. These dementia symptoms are caused by diseases, and Alzheimer’s is by far the most common. An analogy might be pain. The feeling of pain is a symptom, but a variety of causes might be behind it, from a broken ankle to a paper cut.

Another statistic that occasionally appears in the press is that dementia is “the most feared health condition” particularly in the over 55s. So we have a situation where there is a lot of anxiety around dementia, but perhaps not a strong grasp of what is actually going on in the condition. It harks back to the inaugural blog on this site from our patron Terry Pratchett when he suggested that this fear might be “fear of the unknown”. It could also be seen as fear of the misunderstood.

We can fight the fear through education. To understand is to empower. I was impressed by the response from our groups when we gave them a quick explanation of the disease process going on in Alzheimer’s. The mood in the room changed. They suddenly saw dementia in a new light. They realised that if we’re talking about something physical, then we’re also talking about something we can attack and defeat. In the same way that research has delivered incredible steps forward in cancer that have produced survivors, it can achieve the same for other diseases. Diseases like Alzheimer’s.