Forum: Systemic changes needed to recognise key role of caregivers

I appreciated the recent Opinion pieces on dementia caregiving (

Respecting the wishes of people with dementia while keeping them safe

, and “

Alive, but just a shell” – the grief that haunts dementia caregivers

, both Sept 26).

Both articles shed light on the pressing need to balance the autonomy of people with dementia with the safety and well-being of individuals and their caregivers. However, the complexities of dementia care extend beyond these well-articulated points, requiring not only societal mindset shifts but also deeper systemic changes.

Ms Usha Chandradas (

More practical ways needed to support dementia patients and their caregivers

, Sept 30) highlighted that caregivers are often faced with overwhelming challenges, especially when juggling full-time jobs and caregiving responsibilities. In Singapore, a primary informal caregiver provides an average of 37 caregiving hours to a person with dementia weekly.

To nurture an inclusive society with rapidly growing numbers of older persons and informal caregivers, we must seriously consider moving from financial support to financial compensation and recognition of caregivers.

My research found that caregiver burden, depression and health status significantly influence the use of formal long-term care services.

For instance, stroke rehabilitation users at three months post-stroke continued using rehabilitation at 12 months post-stroke only when their caregivers were not distressed at three months post-stroke, but not when their caregivers were distressed.

So, the sister of Mr Lee in the first Opinion piece should have eldercare leave entitlements to provide adequate care. She could “step up” much more with a caregiver allowance that compensates for lost wages and pays for out-of-pocket caregiving expenses.

Additionally, we need to intentionally develop and evolve into an integrated care model that serves both the caregiver and the patient as a dyad, rather than focus primarily on the patient’s needs.

My research has shown that decisions on formal long-term care service use are made by the dyad, rather than by the individual patient. Treating the caregiver-patient relationship holistically ensures that both parties receive the support they require.

In Mr Lee’s case, this integrated approach would facilitate joint decision-making on nursing home placement by him and his sister and support their autonomous wishes for as long as Mr Lee possesses the mental capacity to participate in informed decision-making.

I hope the discussions these articles have prompted will inspire broader systemic changes that recognise the essential role caregivers play.

Wayne Freeman Chong (Dr)