Alzheimer’s disease takes a toll on the family too

Lack of awareness about dementia and Alzheimer’s disease pushes families to hide their loved one’s suffering from society.

However, it takes a toll on caregivers too, who seldom have a support system.

“My father throws faeces out of the house and this upsets the neighbours, who are annoyed with his behaviour,” said a caregiver at a dementia support group meeting that was held by Nightingale Medical Trust, Richmond Road, on Saturday.

Jousha M had to alter his lifestyle to facilitate his ageing father’s needs. The 48-year-old marketing executive gave up his job and works from home in order to take care of his father.

He has moved to a rented space, closer to his sister’s house, hoping this would help soothe his father’s agitation.

“But the neighbours are upset and I’m facing difficulties,” said Joshua. Crumbling under social pressure, Jousha’s health is deteriorating. “I have headaches just thinking of what the neighbours will say next,” he added.

He isn’t alone. There are scores of people in the city who are ostracised socially due to a parent’s failing health. Many are still unaware of the change in a person’s routine when he has to care for a dementia or Alzheimer’s patient. 

On Saturday, caregivers came out to share their experiences with volunteers and to create awareness about the disease. “We hope that such meets can help others understand the stress that caregivers are under,” said Dr Priyamvada of Nightingale’s Medical Trust.

“My mother abuses visitors and this leaves many shocked,” said another caregiver.

For caregivers, it’s a daily struggle to ensure the wellbeing of the patient.  Most caregivers feel drained and depressed as a social support system is almost non-existent. “Society can help in many ways,” said Dr Priyamvada.

Citing an example, she said if a local grocery storeowner knows of somebody in the neighbourhood who is afflicted with these diseases, they could call to check with the family if they need any supplies.

It may not sound like a lot, but for caregivers who are constantly engaged with the patient, it can relieve stress.

Attending the meet, Pavithra Puttur, a relationship manager at iVolunteer, said the group would tie-up with the medical trust.

“We can understand what kind of help we can provide caregivers,” said Pavithra, adding: “Listening to caregivers and spending time with them can also be beneficial to them as they need mental support.”

“Many aren’t aware that doctors can come on house calls,” said
Dr Priyamvada. She pointed out an example where an elder in an advanced stage of dementia refused to walk.

“Only when the caregiver mentioned that the floor was tiled with a black and beige pattern, we realised what the elder feared,” she said. The black tile represented a pothole for the patient. “A coloured rug on the floor took care of the problem,” said Dr Priyamvada.