World Alzheimer’s Day: The unspoken trauma of caring for patients with Alzheimer’s

CHENNAI: Unlike other illnesses, Alzheimer’s disease takes a toll not only on patients but also on their caregivers, who often struggle with the emotional and practical challenges of the condition.

Alzheimer’s primarily affects the brain, causing memory loss, disorientation, behavioural changes, and personality shifts. Patients may forget loved ones, resist personal care, or behave unpredictably.

For families, the emotional pain of watching their loved one gradually lose their identity can be harder than the physical demands of caregiving. Relatives have to be patient and also cautious.

“He doesn’t sleep on most nights. My mother-in-law is a senior citizen but stays in the room with him. So, she also doesn’t sleep, which worsens her high blood pressure and other health issues,” lamented the daughter- in-law of a patient with Alzheimer's.

The patient she describes has memories from the past but cannot remember anything present. “He thinks that the house belongs to someone else and tries to leave the house at night. So, everyone is on high alert at night,” she added. “In his younger days, he worked in Mumbai and the Gulf. So he thinks about going to the office.”

She advises caregivers to be patient even when they keep repeating the stories. “Because, if we get angry, they can become violent. If we speak to them in calm undertones, they too remain calm,” she stated.

Another family member, his granddaughter, piped in: “There are times when he soiled the living room because he wasn’t aware. He also struggles to recognise the children and gets confused about who they are.”

Medical experts say such challenges put caregivers under constant strain. “Alzheimer’s is progressive and the patient will always require constant observation. This can result in caregiver emotional strain, sleep disruptions, medical problems of their own, social isolation and financial burdens related to long-term care costs,” elaborated Dr S Srividhya, associate consultant, Department of Neurology, Rela Hospital.

She advised caregivers to maintain safety at home, follow a daily routine, and communicate simply and patiently. “Engaging patients in simple activities can help improve memory and reduce anxiety. Caregivers must also take care of themselves, through respite care, support groups, and guidance from health professionals,” she added.

Dr Sridhar Vaitheswaran, additional director, SCARF, an NGO working with dementia patients, stressed the need for awareness. “Caregivers often don’t realise that some of their actions may not help. They need training on how to communicate beyond logical reasoning, because patients may not express their needs clearly. For example, when a patient is hungry, he/she might eat things other than food,” he pointed out.

“Many caregivers sacrifice careers and personal time to provide full-time care. This can affect their mental health, so professional or family support is crucial,” Dr Sridhar opined.