Dementia caregivers' dilemma: No tube feeding? Am I killing him?

Tube feeding worsens a patient's quality of life. But many caregivers feel they have no choice.

- Chetna Malhotra, Ellie Andres and Ishwarya Balasubramanian

He couldn't say anything. But Elizabeth would look into his eyes and he would hold her gaze. She would then greet him and he would smile at her.

He was already in the late stage of dementia but was still responsive. Elizabeth (not her real name) felt he was still there.

Tirelessly, she cared for her father, who was bedridden and incontinent. He also had difficulty swallowing.

Elizabeth tried everything to get him to eat just a little more food: she used thickener, prepared soft foods, even blended foods. But mealtimes extended beyond an hour with lots of coughing. The doctor cautioned that her father might choke if this continued. But what about tube feeding?

Both her father's doctor and speech therapist suggested that a thin plastic tube inserted through her father's nose into the stomach could offer a solution.

Elizabeth promptly agreed, seeing no other option available to her.

But were the consequences evident?

Advanced dementia is an incurable condition, which shortens the lifespan of patients. Globally, dementia is the seventh leading cause of death. Yet, while many caregivers recognise there is no cure for dementia, few comprehend its life-limiting nature.

At Duke-NUS' Lien Centre for Palliative Care, we conducted a study, titled Panel study Investigating Status of Cognitively impaired Elderly in Singapore (PISCES), in which we surveyed 215 family caregivers of individuals with advanced dementia every four months, between May 2018 and June 2022.

We found that only 26 per cent of participants recognised their loved one's advanced dementia as a life-limiting condition.

Moreover, their "understanding" would shift by the day - sometimes they thought their loved one was already at the end of the road, but at times, they felt there was still a long journey ahead.