‘Ab jo zindagi bachi hai woh yahaan peacefully ji lein’: In Delhi, how a one-of-its kind dementia daycare offers hope for patients

Kulbir (name changed) is nodding with the beat, her head down. Her caregiver periodically puts a hand on her shoulder. Kulbir raises her head in response, a smile on her face.

The touch is important, says Kulbir’s caregiver. It signals reassurance and comfort, calms and soothes a patient of dementia.

Kulbir used to be a schoolteacher. She is brought to the day-care centre every morning, and her son picks her up in the evening. She is going to school, he tells Kulbir.

Burden of dementia

The centre is run by the Alzheimer’s and Related Disorders Society of India (ARDSI), a nonprofit founded in 1992 that is now the country’s largest group working with patients of dementia.

This centre allows families to leave their loved ones suffering from Alzheimer’s disease or other dementias with trained caregivers as they go about the daily tasks essential to their livelihoods. The caregivers give the patients company, take them for short walks, feed and wash them, and keep them engaged through reminiscence therapy sessions.

A multicentric study published in January 2023 estimated the number of Indians older than 60 years who were living with dementia at 8.8 million. The prevalence of the disease in this group was 7.4%, and the number of dementia patients was projected to rise to 1.7 crore by 2036. (‘Prevalence of dementia in India: National and state estimates from a nationwide study’, Alzheimer’s & Dementia, journal of the Alzheimer’s Association)

Age is the biggest and best known risk factor for dementia. Those of age 60 or older will constitute almost a fifth of India’s population by 2050, and more than 15% of people this age worldwide will be Indians. The burden of dementia will inevitably rise.

“There are physiotherapists, psychologists, and counsellors, but very few (dementia) daycare centres in Delhi and India,” Prof (Dr) Manjari Tripathi, head of neurology at AIIMS, Delhi, said. “These centres offer support to the family caregiver, and ensure they do not have to give up their jobs to look after the patient,” she said.

The cost of day-care can be a major deterrent for many families. The ARDSI centre, which is funded by donations, does not charge for services, but there aren’t many like it – “only two-three in Delhi and a few in Gurgaon, Noida, and Faridabad”, according to ARDSI executive director R Narendhar.

Day-care centres must be safe spaces with trained staff, where efforts are made to help slow progression of the disease through activities such as cognitive and physical stimulation, exercise, singing, and physiotherapy, Dr Tripathi said.

2 women, their stories

Kulbir was diagnosed with advanced-stage dementia two years ago. She had been showing signs — she would leave the cooking gas on, or forget to shut doors. “She changed after my father died,” her son, a 55-year-old businessman, said.

For some time, Kulbir’s son tried to manage the situation himself, feeding and washing his mother, staying up nights with her. Ultimately he had to enrol her at the centre, where she stays from 10 am to 4 pm. Kulbir would be miserable at first, but she gradually grew to like her ‘school’.

The beginnings of dementia in the elderly are often indicated by a decline in memory, understanding, language, speech, and reading and writing from the baseline of previous functioning, Dr Tripathi said.

They might get lost even in known spaces, and may exhibit changes in personality. It is essential at this stage to consult a neurologist who will put the patient through diagnostic tests for dementia, she said.

Kulbir does not speak much. Apart from her son, she does not recognise many others. At night, they sit together, and he listens to her fragmented, halting stories, he said.

Kulbir’s illness has taken a toll on her son, and he once sought therapy. But he now relies on “inner strength”, he said. “Ab therapy leke kya karoonga? Jab tak Ma zinda hain, unke liye sab kuchh karna hai,” he said.

Some patients come to the centre from the old-age home next door. Radhika (name changed), who is in her 70s, has been a resident of the home for the past two years.

Radhika has Parkinson’s disease dementia (PDD), a condition resulting from the abnormal accumulation of protein deposits known as Lewy bodies in the brain, which contributes to both locomotor disabilities typically seen in Parkinson’s and the cognitive decline that is associated with dementia.

Radhika’s sister Vartika (name changed), visits her twice a week, and brings her food. Radhika had been estranged from her family, who discovered her illness during the pandemic in 2021.

“Someone sent us a picture of an elderly woman lying on a cot, wrapped in a dirty blanket. Her hair was grey, skin parched… I realised it was Radhika,” Vartika said.

She found her sister in a small one-room flat, where she was living by herself. People around Radhika had taken advantage as her mental health deteriorated, gradually stripping her of her belongings and leaving her destitute.

Radhika is better now. She has a talent for making handcrafted earrings and necklaces. At the centre, she participates in memory-enhancing exercises that include singing, puzzle and board games, and engaging with old pictures, songs, and films. She has become more mobile, speaks much more, including on politics in the country.

Vartika hopes her sister can spend the rest of her life peacefully at the old-age home and day-care centre: “Isne bahut kathin zindagi ji hai. Ab jo bachi hai woh yahaan peacefully ji le, buss,” she said.

Care and caregivers

ARDSI’s dementia day-care centres are run by teams of 7-8 active volunteers, caregivers, and physiotherapists. In Delhi, ARDSI has partnerships with large public hospitals such as AIIMS, Ram Manohar Lohia Hospital, and Safdarjung Hospital, ARDSI chairperson Renu Vohra said.

Caregiving is a skilled, delicate task that requires specific personal qualities, professional expertise, and the ability to adapt to situations that are unique to a patient. A caregiver must be empathetic and compassionate, trustworthy, and emotionally resilient, Vohra said.

Their work extracts a heavy price from caregivers, who sometimes break down under stress. Guilt, anger, and emotional exhaustion are common.

“We tell them it’s okay to feel angry, but it is essential to take breaks, to not feel guilty, and to find comfort in small gestures like a hug or an apology,” Vohra said.

Some patients may be verbally abusive. Others may be difficult or violent with caregivers. Vohra recalled a case in which a patient would not allow his son to bathe him. Her team suggested changes in the way the patient’s clothes were removed, and advised the family to ensure the bathwater was at the right temperature to reduce the patient’s confusion and anxiety.

ARDSI advises families and caregivers that even ordinary objects can sometimes trigger fear in patients – bathroom mats and black tiles may look like holes, harsh lighting may cast shadows, and firecrackers may sound like bombs to them.

The incidence of dementia is higher in women, and daughters and daughters-in-law often find themselves in caregiving roles, and forced to make a range of personal sacrifices. Organisations like ARDSI provide them with training, counselling, and support. The more frequently the caregiver’s mental and emotional health is inquired into, the better, Dr Tripathi said.

Among the most powerful tools in dementia care is compassion, experts say. Patients can understand a smile, a gentle touch, a light squeeze of the shoulder, holding hands, or a hand on the back, even if they don’t understand words. “You cannot argue with dementia. But with empathy, training, and patience, you can walk alongside it,” Vohra said.