Sheltering a wandering mind: Why India needs more daycares for people with dementia

It was about four years back that Bangalore-based retired Navy officer KC Ponnaiyan, aged 67 then, went missing. Ponnaiyan suffered from Alzheimer’s disease, and had a full-time nurse. He went missing at Indiranagar, some 15 kilometres away from his home, where his nurse had taken him without his family’s knowledge. His family frantically searched for him, supported by volunteers, for three days. They asked passers-by, used social media, and even had influential people and the Navy pressuring the police to find Ponnaiyan.

While they combed the city based on tips, Ponnaiyan was rescued by villagers in Anekal, some 40 kilometres away, close to Tamil Nadu border, after they found him unconscious in a dry lakebed. Ponnaiyan’s son picked him up at RVM Foundation Hospital in the city where destitute people with mental disabilities are usually sent.

Ponnaiyan had no recollection of what had happened, but his behaviour changed after the episode. Earlier he liked to walk and go out on his own, but now he doesn’t even go to the door of the house by himself, says his daughter-in-law Paluk Khanna. “The incident would have been traumatic for him. When my husband found him, there was relief on his face,” she recalls.

Ponnaiyan is among those lucky to be rescued. In many cases, people with dementia who wander, are not found at all.

Dementia refers to a group of symptoms such as loss of memory, judgement or language, caused by damage to neurons in the brain. It usually affects those aged above 60 years and progresses with age and is most commonly caused by Alzheimer’s disease. The affected person gradually becomes disoriented, behaves inappropriately, has difficulty doing basic tasks like eating, and may wander and get lost even in familiar places.

Vaishnavi Jayakumar, co-founder at The Banyan, a Chennai-based NGO that rescues people with mental disabilities on the streets, says, “People with other mental illnesses like schizophrenia may suffer physical or sexual abuse on the streets, but are able to eat something and somehow fend for themselves. But a person with dementia does not even know himself, where he comes from, is elderly and fragile, and is dependent on medication.”

A person with dementia, when lost, wouldn't know how to get drinking water, cross the road or handle money. They wouldn’t know how to ask for help either. Sometimes this could be fatal, as in the case of Manohar Lal Sharma, who died of dehydration after five days of wandering in Delhi, in 2013. There are no statistics on dementia-related wandering, but as per Alzheimer’s Association, US, 60% of people with dementia wander and up to half of those who are not found in the first 24 hours suffer serious injury or death. In India, over four million elderly people have dementia, and the numbers are set to increase rapidly, as per the World Alzheimer Report of 2015.

In search of something

According to some working in the domain, ‘wandering’ is not the right term, because the person with dementia is often purposefully seeking out something. Dr Radha S Murthy, Co-founder and Managing Trustee of Nightingale Medical Trust (NMT) in Bangalore, says wandering could be due to four reasons - following an old pattern (like going to office), not being able to find something, boredom, or walking in circles without any reason. “Wandering can be reduced if the caregiver can identify the person’s need and satisfy it, but this may be difficult. The person can be engaged in activities and distracted, to reduce wandering,” she says.

Dr Radha S Murthy, Managing Trustee of Nightingale Medical Trust

As per the NCRB (National Crime Records Bureau) data of 2016, over 13,200 elderly people had gone missing in 2016 alone. Sailesh Mishra, who runs ‘Missing Senior Citizen Alert’ - an online initiative to help track the missing elderly - estimates that 80% of these cases are due to dementia. The actual numbers of people wandering due to dementia could be much higher, as police complaints are not filed if the person is found quickly or if the family doesn’t try to find him.

Sometimes, the person with dementia gets diagnosed only after a wandering episode. When Rajesh*, a Mysorean aged 64, started having memory lapses, his family thought it was part of normal ageing. But about 18 months back, when he had gone to the US with his wife Seema*, he lost his way twice - first at a library that he regularly went to, and second at the airport in US before his return journey. Both times, Seema found him with some help. Rajesh was diagnosed with dementia once he was back in Mysore.

But majority of dementia cases in India are never diagnosed, because of lack of awareness of families and lack of training among doctors. About 90% of people with dementia in India don’t get even basic evidence-based care, even though medication, palliative care, activities etc can significantly improve the person’s quality of life.

Lack of support systems

Caring for a family member with dementia, especially one prone to wandering, is taxing. “It’s more than full-time work. Whichever way you care for the person, there are still chances of wandering,” says Vaishnavi. Often families try multiple measures like putting multiple locks on doors or stitching the person’s address on his clothes, hoping that at least one of these would work. Some families like Ponnaiyan’s also use GPS trackers, though questions have been raised on its effectiveness and the ethics of tracking a person’s every movement.

In both urban and rural India, over 90% of people with dementia are cared for by a family member, mostly a woman. ‘Carer strain’ is common among these caregivers, especially because the dementia would progress despite their care; they usually have no support systems either. Families don’t often hire paid caregivers or ‘home nurses’, who are anyway usually not trained in dementia care.

Carers tend to develop depressive disorders, and their physical health and immunity can deteriorate. Most carers also end up quitting their jobs or switching to part-time or lower-paying jobs. In one study in India among 179 carers, cited in the Dementia India Report 2010 published by ARDSI (Alzheimer’s and Related Disorders Society of India), 60% had developed mental health issues. If the carer is an elderly spouse, he is even more vulnerable.

Where are the daycares?

Daycare centres are good support systems for people with dementia, especially those who wander, says Susan Jason, Manager at Sandhya Kirana, NMT’s day care in Bangalore. “Dementia care is more about how you interact with the person and do activities with them, and less about giving food and changing diapers. We plan activities depending on the person’s background and interests,” she says. Daycare centres also have cognitive stimulation exercises like reminiscence therapy that may delay the progression of dementia. Trained staff ensure the person does not wander outside, and these centres usually have large spaces to allow the person to walk around freely. They also take the pressure off carers for a few hours. Full-time residential care is needed only if the person’s dementia has advanced or if his family is unable to care for him.

Ponnaiyan used to go to Sandhya Kirana earlier, but stopped after shifting to an apartment farther away. Paluk says, “He was much calmer when he went to the daycare. It would set a routine and he would be with people. Now it’s just one person who is with him all the time.” Paluk says that more daycares are needed. “If there was one nearby, he could have gone there.” But there are only five daycares in Bangalore overall, all run by NMT. Travelling long distances to a centre is tiresome for a person with dementia, and also expensive as they can’t use public transport.

Activities for people with dementia at NMT's residential facility in Bangalore

In rural areas, families are on their own. In Karnataka, outside of Bangalore, there are only a couple of daycare centres exclusively for dementia patients. HD Gangadhar, from Hullahalli village in Mandya, had taken his mother to NIMHANS last year for treatment, where she even had a wandering episode and was sent to a shelter home by the police. She is now back in Mandya, and Gangadhar can’t afford further treatment for her. Those in nearby villages know of her condition now; they bring her back whenever she wanders. “Some of them know she has dementia and bear with her behaviours, while some others think she is pretending and yell at her,” says Gangadhar.

As per the dementia resource website ‘Dementia Care Notes’, there are only some 26 full-time care homes across India for people with dementia, with total capacity below 2000. Daycares are even fewer than full-time facilities. These facilities are negligible for the millions in India who have dementia now. Facilities are also concentrated in urban areas, and expensive, so that both the rural population and lower income urban families can’t access these.

Public initiative on dementia

Kerala is perhaps the only state where dementia care facilities are dispersed across districts. In 2014, the former Congress government there also started the public-private venture ‘Kerala State Initiative on Dementia’ (KSID), in association with ARDSI. The plan was to set up one daycare and residential facility each, in every district. So far, one daycare has been started in Thrissur, and one residential facility in Ernakulam. These centres are for BPL categories, and don’t charge any fees. ARDSI runs the centres, and state government funds them. In comparison, ARDSI’s own centres charge around Rs 10,000 for daycare, and Rs 20,000-22,000 for residential care. The Kerala initiative is considered a model for other states, but not much has moved after the new CPI(M) government came to power in 2016, says Latha Joseph, National Dementia Trainer at ARDSI.

Organisations running care centres say these are not quite viable. NMT charges Rs 7000-8000 per month for its daycare centres, Rs 25,000-45,000 for its residential facility in Bangalore, and Rs 15,000-18,000 for its Kolar facility that makes use of telemedicine to bring down costs. “Still we don’t break even,” says NMT Secretary and Co-founder S Premkumar Raja.

Lack of government support

Central government funds dementia care facilities under its IPOP (Integrated Programme for Older Persons) scheme. In 2015-16, seven daycare centres that take in people with dementia, were given Rs 66 lakhs overall under IPOP. But from this financial year, the funding for dementia day care centres have been stopped; only full-time dementia care homes will be funded from now. Organisations like NMT and ARDSI already don’t apply for these funds due to the tedious application process.

Stopping the funding of daycare centres, instead of promoting them, means a major support system becomes even less accessible to the public. This is when dementia care already pushes lower income groups into poverty. The poor often have no option but to let the person wander or lock him up. Dementia India Report says that, as of 2010, the cost of care for the average seven-year life span of a person with dementia, was about Rs 9.6 lakh, which is about Rs 1.4 lakh per year. The number would be far higher now. Paluk says the monthly cost of care for Ponnaiyan comes to Rs 45,000-50,000, including the cost of medicines, a full-time nurse and a supervisor.

Support facilities are lacking not just for people with dementia, but for those with other mental disabilities who wander. Maithili, 23, living in a slum in Whitefield, Bangalore, had been lost twice. She suffers from an intellectual disability, but her mother Shazeda doesn’t know what exactly it is. Shazeda is a domestic worker at multiple homes.

Maithili routinely wanders nearby, when her parents are at work, and Shazeda brings her back each time. Last year, Maithili went out one noon and wasn’t back; the whole community searched but couldn’t find her. She had sat alone at a temple far away, all night, and only the next morning did Shazeda find her. The second time, Maithili was picked up by the police from a bus stop and sent to a shelter. Shazeda, along with her teenage son, combed the streets on a bike. Only on day three, did the police connect the dots and send Maithili back to her.

Shazeda

Shazeda knows of a school for children with intellectual disabilities free of cost and had even sent Maithili there for couple of days, Maithili had liked the school. But the school is far, offers no transport, and Shazeda can’t afford to miss work to take Maithili there. The full-time care for Maithili and anxiety about her wandering has worn Shazeda out. She has quit some jobs, and her monthly income has come down from around Rs 16,000 to Rs 10,000-12,000. This is the family’s major income as Shazeda’s husband, a construction worker, does not get routine work. In Bangalore, the number of organisations for those with intellectual disabilities is few, and is concentrated in core city areas, away from Shazeda’s home in the outskirts.

Dr. KV Kishore Kumar, Director at Banyan, says that government infrastructure for mental healthcare services exists, but doesn’t work. “The District Mental Health Programme was piloted in Bellary in 1985, and now exists in 526 out of around 700 districts in India. Under this programme, primary healthcare centres should reach out to the community and identify people with mental disorders. But in many cases, authorities responsible are not even aware of the programme.” He says that, in this scenario, the best option is to strengthen care within families, through support at the panchayat level. “Families who lack the resources or who don’t want to care for the person, can be incentivised through financial support from government, free home care services etc.”

Better police response needed

When a person with mental disabilities goes missing, the onus is on the families themselves to search for the person. Paluk says that, despite the pressure they put, the police response was only to assign two constables to the case. “Police did not obstruct our search, that’s all. We did the search ourselves,” she says.

Shazeda says that during both the times Maithili went missing, the police had turned her away. “The first time, police told us to do the search ourselves. The second time, they just said they will search for her. They got involved only after my employer came to know of the issue, and got her friends to talk to the police,” she says.

Overall, the police doesn’t have a specific mechanism to respond to missing cases of people with dementia or other mental disabilities though the latter are unlikely to return by themselves and are at high risk. The response varies, depending on the individual police officer. This is in contrast to systems like Silver Alert in US, wherein information on missing people with dementia or mental disabilities is publicly broadcast, and search is prompt.

Sometimes poor police response has even led to deaths. An example is the case of M Praveen Kumar of Chennai. Praveen Kumar, 26, had gone missing at 7am on January 13th. Though Praveen’s mother rushed to Teynampet police station to file a complaint, police filed the FIR only at 5 pm. Praveen had not gone too far and he was mowed down by a vehicle early morning the next day. The Disability Rights Alliance in Chennai say that neither did the police search for him nor did they pass on his information to other teams in the city. A systemic overhaul is needed to support those with mental disabilities who wander - to develop better awareness, diagnosis and support, and for sensitive police response, the Alliance says.