The "D" word

“Friends, family are uncomfortable and say they don’t know how to behave ‘normally’ around me anymore.”

“People no longer ask your advice on anything. They talk to the person you are with and not you.”

“People avoid conversation once you start showing you are having a word or thought retrieval problem.”

Dementia is a term used to describe the symptoms of the disease that impairs the thinking functions of the brain.
‘De’ means absent or reduced, and ‘ment’ means cognition.

Dementia-related changes in cognition (eg. increasing forgetfulness), behaviour (e.g. depression or hallucinations), or physical changes (eg. immobility or incontinence) can trigger dementia-related stigma which can accentuate the distress experienced by persons living with dementia as it reduces their identity from the whole and usual person to a lesser version of themselves. When “having dementia’ becomes the defining attribute of that person, they take on an identity that eventually erodes their full adult personhood.

Nearly one in four people living with dementia, conceal or hide their diagnosis citing stigma as the main cause. The loss of identity, independence, and feeling marginalized by friends, family and society, can often lead to despair, loss of self esteem and social withdrawal. The invisibility of many people with dementia to the public gaze only magnifies this. With ageing populations the world over, demystifying and challenging negative attitudes around dementia is becoming increasingly important, from the language we use to describe dementia and the service environments we create, to how we bring about awareness and education.

Dr Sarang Kim and her research team at the Australian National University, are utilizing a couple of approaches in the Dementia Stigma Reduction (DESeRvE) study. The education plus contact approach involves participants learning factual information about dementia in order to replace inaccurate stereotypes, in addition to watching video clips reflecting what it’s like to live with dementia and what it’s like to care for someone with dementia. This study aims to form an evidence base for the feasibility of dementia-related stigma campaigns to educate the general public. The study is supported by the Hazel Hawke Research Grant in Dementia Care from Dementia Australia.

Hazel Hawke once said, “It is very important that we look at what we can do, rather than what is impossible to do.” In this spirit, when she was diagnosed with Alzheimer’s disease, Hazel used her own experience to raise awareness about dementia and tackle the stigma surrounding it. She set up a charity for care and research of Alzheimer's disease that continues to give today, translating her compassion into action.

REFERENCES
Liu, D., Hinton, L., Tran, C., Hinton, D. and Barker, J. (2008). Re-examining the Relationships Among Dementia, Stigma, and Aging in Immigrant Chinese and Vietnamese Family Caregivers. Journal of Cross-Cultural Gerontology, 23(3), pp.283-299.
Milne, A. (2010). The ‘D’ word: Reflections on the relationship between stigma, discrimination and dementia. Journal of Mental Health, 19(3), pp.227-233.
Overcoming the stigma of dementia. (2012). World Alzheimer Report. [online] Available at: http://www.alz.co.uk/research/world-report-2012

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