FIFTY-FIVE million people above age 65 worldwide live with dementia, a chronic neurocognitive disorder that affects brain functioning and causes progressive loss of cognitive, social and physical skills. My journey as a full-time care partner to my 88-year-old mother living with dementia shapes my perspective that the syndrome intersects with gender, ageing and disability, and guides my advocacy for a disability rights model in dementia response.
Malaysia is home to around 270,000 persons with dementia – 10% women, 7% men, echoing the global pattern of its impact on women disproportionately. More women than men live with dementia (female-to-male ratio of 1:69) as they live longer and comprise most older adults at advanced ages. On average, compared to older men, older women have had less education; a risk factor for dementia. Women make up 65% of total dementia-related deaths.,
Driven by gender roles, women represent two-thirds of informal care partners globally. We provide a disproportionate amount of care hours, up to 71% in lower-middle income countries. We experience physical, mental, social and financial impacts, including developing dementia. Generally, we report higher levels of burden, stress and depressive symptoms than our male peers. We are “invisible”, our aspirations and needs ignored. We are unpaid, yet our contributions account for half the estimated US$1.3 trillion cost of dementia care.
In the formal dementia care sector, it is again women who make up the largest proportion. An online global survey by Alzheimer’s Disease International found that 79% of professional care partners in lower- and higher-income countries self-reported that they had received specialist training in supporting persons living with dementia. However, there is little evidence that this is the case in Malaysia and in lower-middle income countries. A shared reality is that both informal and professional care partners felt unsupported to perform a very demanding and stressful job. These facts highlight gender inequalities that harm women’s well-being, rights and progress.
Advanced age is the strongest risk factor for dementia, but it is not a normal part of aging. The National Health and Morbidity Survey (2019) reported that 8.7% of older adults above 60 years live with dementia. The prevalence may increase to around 11% as the country becomes an aging society. Older adults with dementia go through two progressions of aging and dementia. The challenge of dementia pushes holistic care and support to a higher level. As such, if Malaysia gets it right with the dementia and disability responses, it will do well with meeting the needs of older adults in general.
Dementia is a major cause of disability and dependency in adults aged 65 and above. Yet, the global responses, including in Malaysia, are predominantly driven by the medical model which focuses on the condition and treatment rather than the needs and wishes of the individuals. The relational dynamics between the person and their care partners, and the needs of the latter are often neglected.,