Sheila holds 10 teaspoons in her hands and every time the cooker whistles, she puts one down. After 10 whistles, she switches the cooker off. The rice is done. She takes down two pots and prepares one of the five vegetable dishes she remembers. When dinner arrives at the table, there are two places set for five people but she is resolute about particular people being assigned particular plates. There is to be no intermingling or sharing of plates; everyone must know their plate and place at this table.
For 56-year-old Tamil-speaking Usha Rao, attending this dinner at her in-laws’ home was a fundamental moment, signalling to her that something was wrong with her mother-in-law, Sheila. Whereas previous lapses of Sheila’s memory were dismissed by extended family and friends as, ‘a little memory loss’ associated with ageing, the decline in her cooking skills alerted Usha to the possibility of dementia.
Similarly, for 70-year-old Arabic-speaking Ellie Haddad, when her 80-year-old mother did not recognise her two granddaughters, maintaining instead that Ellie had a son (she did not), Ellie realised that something had profoundly shifted in her relationship with her mother. Until then, many other signs such as short-term memory loss, difficulty eating, and struggles with mobility were met with equivocal responses.
Why is there delayed diagnosis?
Neither case is unusual among Australia’s burgeoning migrant communities, where limited knowledge about dementia and different cultural understandings of care prevail. Research has consistently shown that in migrant communities, early signs of dementia are often regarded as part of normal ageing rather than signs of illness.
There are many factors affecting timely diagnosis. These include low English proficiency; social isolation; lack of awareness of dementia; lack of awareness of health services; different cultural understandings of ageing and cognitive decline; and the role of family in facilitating diagnosis and care3,4.
It is important to address these barriers because although dementia is not yet curable, timely diagnosis and early intervention can enable improved prognosis and management, positively affect people with dementia and their carer’s mental and physical health, and enhance community participation, quality of life, and socioeconomic outcomes.
Moving Pictures, a collaborative project between National Ageing Research Institute and Curtin University, is an innovative multi-media project that aims to address these barriers through the production of fifteen short films co-produced with people from Indian, Sri Lankan, Chinese and Arabic communities, some of the fastest growing migrant groups in Australia today.
Using film as the medium has been a deliberate ploy. The latest census reveals that approximately 80% of Australia’s culturally and linguistically diverse households access the internet, with the heaviest users from Asian backgrounds8. This is in part due to keeping in contact with family and friends in distant lands.
The time to act is now.
Developing user-friendly, relevant and culturally appropriate resources is timely. Dementia is already the single greatest cause of disability in older Australians (aged 65 years or older) and the third leading cause of disability overall1.
Alongside population ageing, Australia is also increasingly culturally diverse. One in three older people is from a migrant background and overseas-born migrants are a growing proportion of the total population (currently 27%; in 2011 it was 25%), a rate higher than other comparable countries such as the United States (14%), Canada (22%), and New Zealand (23%)4.
Once alerted to what dementia is and how it unfolds, working with culturally diverse communities opens up diverse ways of thinking about care, what care means, who does it, how it reshapes what is means to be human, and to love.
For example, in Hindi there is no word for dementia but over 40 words for care. In Mandarin, guān huái, one of many phrases used to describe care literally translates as a closed bosom or the love a mother gives her child at her breast.
Migrant carers, especially from Asia, often talk about how dementia has reconfigured their relationships amplifying parent and child roles. This is not about them infantilising their loved one with dementia, but about using the analogy of a precious and loving bond to explain the reciprocal nature of their care.
Attuning services in a multicultural country such as Australia to these different cross-cultural perspectives reveals different and innovative care models. There is no universal approach to care or to love, and the more options we have, the stronger we are in tackling the many challenges that come with dementia.
September is Dementia Awareness Month.
Dr Bianca Brijnath is Director, Social Gerontology at the National Ageing Research Institute. Her research interests include mental health; culture; care; and primary care.