How to deal with stigma when you have dementia

It's a sad fact that many people living with dementia feel embarrassed and ashamed about their condition and worried about what others might think. Find out why dementia still has such a stigma

Being told you have a serious illness is always going to be traumatic, but a dementia diagnosis often carries an added burden. Alongside all the practical decisions and possible medical treatment, lies a stigma which can make life even more difficult.

Why does it happen?

Fear and ignorance are largely to blame for the stigma surrounding dementia. The two make a powerful and insidious combination in which myths and misunderstandings get tangled up and produce a distorted picture of the illness. This can lead to people with dementia not receiving the respect or care they deserve, when they need it most.

stigma dementia care

The fear factor

Just as cancer was our biggest fear in the 60s and 70s, the 'C' word has now been replaced in many people's mind with the 'D' word – and it's not difficult to work out why. For while cancer is still a devastating illness, there has been great progress in awareness and treatments meaning, thankfully, that many forms are now survivable or even curable. Dementia however has no cure – yet – which can seem a frightening prospect.

Fact: A recent survey revealed that people over the age of 55 fear dementia more than any other condition including cancer.

Ignorance is bliss

Once fear sets in, many people come to the same conclusion. 'If there's no cure for dementia, what's the point of knowing you have it.' This kind of reasoning can lead someone who's worried about their memory to put off seeking a diagnosis. It can also reinforce other misconceptions about the illness. After all, it's far easier to tell yourself that your increasing forgetfulness is 'just my age' than to consider an 'incurable' alternative.

Two facts worth knowing

1. Around 850,000 people in Britain are thought to have dementia but only around half of them have received a proper diagnosis. Experts think part of the problem is that many people are too afraid to get a diagnosis, so put off seeing a doctor.

2. 1 in 4 people with dementia admit to trying to hide it.

How does stigma lead to inequality?

The stigma of dementia doesn't only affect people who may, or may not, have the condition. It also affects their friends, family and the wider community. This, in turn, can lead them to:

- Deny it's happening – because it's too upsetting to think a loved one may have an 'incurable' condition.

- Avoid people with dementia – because they're worried about 'saying the wrong thing' or feeling upset.

- Discriminate – often without realising it. They may 'talk down' or not allow them to be involved in decision making.

Did you know? Doctors say patients with dementia tell how their friends 'disappeared' after they were diagnosed and in some cases how their own children have stopped visiting.

Inequality

It's no wonder then that people with dementia can end up feeling marginalised, isolated and depressed. Their carers also report feeling depressed, stressed and lonely not only because the job they're doing is hard, but because the stigma attached to the illness can make it even harder. For example:

Age discrimination
Many people with dementia are over 65, but dementia is not simply about 'getting old' it's a serious illness.

General attitudes and ignorance
It can lead to patronising or poor quality care.

Financial discrimination
The fact that dementia care is often means-tested reveals one of the biggest inequalities of all; if you're unlucky enough to develop the condition it won't automatically be paid for on the NHS.

The good news

Things are changing rapidly. For example, more than one million volunteers in the UK have now signed up to become Dementia Friends to help raise awareness, combat loneliness and end the social stigma of the condition. Plus, all NHS staff – from hospital porters to surgeons – are to be given training in understanding dementia, as part of the government's Challenge on Dementia programme.

 

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