Dementia – More awareness, less STIGMA.

Published: 22/05/2019

Dementia is now Britain’s largest killer so there is suffering on a huge scale, not only for the people who have Dementia but the millions of people that provide the care and support on a daily basis. Over the last 10 years we have observed improved awareness, however myself and the team at Bluebird Care Camden & Hampstead still witness a certain stigma related to this degenerative disease. On a monthly basis we hear the phrase “suffering with dementia."Read more about our dementia care services serving Camden & Hampstead.




I am not surprised that there is a negative perception as the impact on those with the illness and on their families can be profound. Dementia results in a progressive decline in multiple areas of function, including memory, reasoning, communication skills and the skills needed to carry out daily activities. Alongside this decline, individuals may develop behavioural and psychological symptoms such as depression, psychosis, aggression and wandering, which complicate care and can occur at any stage of the illness. Family carers of people with dementia are often old and frail themselves, with high levels of depression and physical illness, and a diminished quality of life. Dementia is a terminal condition, but people can live for over 10 years after diagnosis.
 
Presuming that all of the 850,000 plus people in Britain are all suffering is naïve and presumptuous. I won’t write my usual phrase about the dangers of presumption as it includes the F word! I will instead remind you and I about the novelist Cynthia Ozick’s quote “All writing is presumption, of course, since no one knows what it is like to be another human being".
 
Phil Richards, the former communications assistant at the Centre for Ageing Better here in London has previously written about the impact of negative language and ageism. “If you tell someone something often enough, they eventually start to believe it. This can be a wonderful thing, used to reinforce positivity. But it can also be extremely damaging when you’re repeating words that constantly undermine.”

Using negative language about older people is simply ageism – and this unappealing habit has become so mainstream we hardly recognise we’re doing it. But the effects and consequences of our choice of vocabulary run deep.

“Not only is our use of language having negative impacts on older individuals, but it also affects the way society views and treats them. Research from the Equality and Human Rights Commission on the processes of prejudice shows that subtle, implicit, forms of prejudice can be manifested through language; and that stereotypes can influence our judgements and behaviour even if we don’t agree with them.”

The internet and the media are full of negative language about older people and people living with various health conditions and disabilities, encouraging the mindset among members of the public that it is acceptable to refer to people in this way, especially people living with dementia.

The negative presumption used by people of all ages can stick with those most likely to get dementia. The results of a study published earlier this year by Yale School of Public Health, states that a positive attitude towards ageing could halve the risk of dementia.  The study showed that older people who have positive beliefs about old age are far less likely to develop dementia.
 
I don’t know how much validity there is in the research carried out and am certain that it is more complex than this and unclear whether healthy lifestyle habits motivated by a positive outlook on ageing are responsible for reduced risk of developing dementia. I am however certain that positive communication and perception should trump negative 100% of the time

Yes, there can and will be sadness, helplessness and more. However, many people living with dementia have positive feelings, it a fighting spirit can eb evoked and also many people living with dementia have and will experience feeling optimistic and living well.
 
The language we use about dementia has a real impact on the way the disease is viewed and understood throughout our society, and it’s vital that the words we choose when talking about dementia are accurate, balanced and sensitive.
 
Let’s not presume and lets not stigmatise.


Written by George Morris - Director

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