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.
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
"For those of us living with dementia, our memories are our most valued possessions... when we lose our memories, it doesn't mean we lose emotions that we feel inside."
Wendy, Kath and Christopher are three people living with Alzheimers.
This 13 minute BBC documentary: A month in the life, is a good insight into the struggle and spirit of their journey from early to mid stage dementia.
Understanding late stage dementia and Caring for someone with dementia (Eating) help sheet
"When we were growing up, dad grew flowers for the Easter show and my job was to count every petal on the smaller buds. He used to grow snow peas too, all along the side of the house. They grew all the way up to the roof!”
Who provides Creative Care in Aged Care?
One of the care strategies in residential aged care is to implement recreational activities to promote better quality of life and social engagement. Participating in these activities on an everyday basis can be utilized as part of a non-pharmacological treatment strategy to alleviate BPSD, as well as satisfy the basic human need for meaningful involvement in activities. These activities are carried out by Activity coordinators.
An Australian Study, by IP Demecs in 2015, found that many activity coordinators found that dementia itself can be a barrier to the implementation of activities. Only a few activity coordinators stated that creative activities should be used to overcome these barriers. Typically activity coordinators did not use creative activities for managing BPSD; they had other strategies such as one-to-one activity, redirection and alternative therapies such as massage to involve people with dementia in activities and improve apathy and withdrawn behaviour.