‘Alive, but just a shell’ - the grief that haunts dementia caregivers

It's called pre-death grief and it afflicts caregivers even before the physical loss of their loved one.

- Chetna Malhotra

Dementia is a condition that robs individuals of their cognitive functions, eroding over time their personality and changing their behaviour.

As the disease progresses, families and friends of those affected grapple with the sadness and helplessness of losing the person they once knew, while also anticipating the inevitable physical loss.

This unique form of grief, experienced while the loved one is still alive, is known as pre-death grief. It is a complex emotional journey for caregivers and can be as challenging as mourning the physical loss of a person, warranting attention and compassion.

For a long time, the common belief was that this pre-death grief would help prepare caregivers for the eventual loss they would experience. But, as with other forms of loss, it turns out that denying these feelings has far more harmful consequences.

Consider the story of Alex*. Alex's relationship with his mother, Madam Tan*, was fraught with conflict for years. Madam Tan was known for her domineering personality and had strong opinions about almost everything in Alex's life, including his spouse.

Her disapproval of his marriage was so intense that she threatened not to attend Alex's wedding and caused significant strain on his young marriage. For a time, Alex found himself caught between a domineering mother and a strained marriage, leading him to live separately from Madam Tan.

Years passed, and the fractured family dynamics gradually healed. However, as Madam Tan's dementia progressed, the once vibrant matriarch became a passive shell of her former self. The sharp arguments and daily phone calls that once punctuated Alex's life were replaced by silence.