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.

Although dementia is not specifically stipulated in the Convention on the Rights of Persons with Disability (CRPD), persons living with dementia are protected by it because dementia fits in the definition of disability – persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments, which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. Malaysia ratified the convention and adopted this definition in its Persons with Disability (PWD) 2008 Act but omitted the phrase “on an equal basis with others”. 

Persons with dementia can identify themselves as disabled under the PWD Act by obtaining the orang kurang upaya (OKU) card and accessing its accommodations. But few choose to do so because upon a dementia diagnosis, the person typically becomes defined by the condition and is devalued and exposed to stigma, discriminatory practices and rights violations. By extension, my identity as a care partner has reduced me to nothing more than a moral symbol, embodiment of a filial daughter, despite my lived experience and professional public health and rights work record. 

In 2019, the Ministry of Health drafted the National Dementia Action Plan 2021-2030, guided by the seven action areas included in the WHO Global Action Plan on the Public Health Response to Dementia – advocacy, policy, planning, legislation, service provision, monitoring and research of dementia. One of the cross-cutting principles is the empowerment and engagement of persons with dementia and care partners in all seven areas. However, my efforts – together with other dementia and disability advocates – to push for the implementation of this principle and attempts to contribute to discussions have largely been ignored.

Failure to systematically engage the “experts by experience” (persons living with dementia and their care partners) is against the spirit of “nothing about us without us”. It sends the message that those with lived experience are unresourceful and have nothing to contribute, and thus can be ignored. These values and practices contribute to the existing pervasive stigma and prejudice which have significant implications for the persons with disabilities and their care partners. They violate the rights of persons with disabilities to access information and to engage as guaranteed in the PWD Act (section 30) and CRPD (article 4.3) respectively. 

Despite the reservations, it is critical for all stakeholders to recognise dementia as a disability to (1) identify the societal physical and attitudinal barriers that prevent social inclusion, rights realisation and access to services, and (2) provide a framework for advocacy from the disability rights model that recognises these barriers and impacts. Removing these barriers, and addressing gender inequalities, will pave the way for all persons affected by disabilities to live in dignity and self-determination. – December 5, 2022.

Note: This article was originally written for ARROW for Change journal. Some parts of this article were included in a published article “Make Malaysia a dementia inclusive and positive country” by the Disability Rights Cluster/CSO Platform for Reform. 

* Sharifah Tahir reads The Malaysian Insight. 

* This is the opinion of the writer or publication and does not necessarily represent the views of The Malaysian Insight. Article may be edited for brevity and clarity.