Fifty-two-year-old Anjana’s (name changed) father, now 87 years old, was a man known to live by the clock. He was an early riser and meticulously managed the household finances after retirement. However, when he was 84, he started forgetting simple things. His wife, an economics teacher, heard complaints from the neighbourhood shopkeeper of underpayment or overpayment. A call from their bank followed, saying her husband was making multiple calls asking the same questions.
They consulted the family doctor, who initially said these signs may be age related. But her father showed no improvement. He started sleeping at odd hours and would get agitated if he was not allowed to. That was when the doctor alerted the family that he could be suffering from dementia.
After her mother died of cancer last year, Ms. Anjana, then a household energy consultant, brought him to her home. The first scare came one night when her father, in a disoriented state, imagined himself to be in his younger days in Germany and started saying he wanted to return to India. “From then on, the situation deteriorated. He became a totally different person and started refusing to respond to me. Last August, we admitted him into a residential care facility,” she said.
Dementia, a condition that affects a person’s cognitive functions, including memory, language, orientation, concentration, thinking, planning and the performance of day-to-day tasks, gets worse over time. Gradually, the person becomes dependant on caregivers.
It is for this reason that an increasing number of caregivers are turning to professionals for help and opting for residential or day care for patients diagnosed with dementia. According to Nightingales Medical Trust (NMT), the number of families who opt for residential care has increased in recent years as the challenges of managing care have also been rapidly growing.
Radha S. Murthy, managing trustee, NMT, said from around 45 patients in 2010, when they started residential care, the numbers have reached 180 in three centres (100 in Kasturinagar, 50 in Kolar — managed through tele-medicine, and 30 in the Kothanur facility for women), and there is demand for more.
“Residential care helps in providing the much-needed respite for the family and short-term care, especially to manage behavioural problems, and enables the family to care for longer. The takers for the day-care centres too have been steadily progressing over years as awareness is increasing among family members about the importance of being cognitively engaged,” said Sruthi Sivaraman, team lead — Dementia Care, and psychologist, NMT.
Challenges to caregivers
According to Ms. Sivaraman, the challenges to caregivers are lack of support from other family members and society, identifying, adapting and catering to changes such as disease progression, behavioural problems, acute infections or communication issues, and lack of resources for mental preparedness.
“Day care is opted by a person with dementia at all the stages of the disease. This helps in slowing the deterioration of cognitive abilities and also in socialisation. It also aids in giving routine to them and they can continue to be active in society as long as possible,” she added.
Vijaykumar Harbishettar, associate director for Dementia Care, R & D lead, NMT, said though medications called cognitive enhancers are prescribed to reduce the speed of worsening of the disease, cognitive stimulation in day centres, including structured activity and socialising, may help.
“Care in day centres or professional trained carers at home will initially help reduce carer stress. Those with behavioural problems require anti-psychotic or related medications, with careful monitoring. In advanced stages, some of them require 24-hour care initially as a respite for family,” he said.
New dedicated facilities
New residential facilities dedicated to dementia care have also come up. ‘NIKISA Dementia Village’ in north Bengaluru claims to be the first such facility in Asia. Started in October last year, it is a 50-bed residential facility exclusively for dementia patients.
S. Subramanya, a retired IAS officer and director of NIKISA Healthcare Services Pvt. Ltd., said there were 21 patients as of now, with an average age of 85. “We don’t offer day care as it is difficult for patients to have different environments in the morning and evening. Familiarity of persons and environment is very important for them. In the case of home care, as we cannot engage a nurse assistant for 24 hours, it will again mean a change of person, which is not a useful situation for dementia patients,” he said.
Mr. Subramanya said the idea to start such a dedicated facility came from previous experiences. “When we provided home services, for the caregivers, it is an additional person to feed. In some cases, the nurse assistants were made to do sundry tasks. We then started a geriatric centre, but I realised that dementia patients live in different circumstances,” he said.
At the Dementia Village, the admission procedure involves family members having to stay with patients for a few days until the patients are familiarised with the new environment. The all-inclusive charge is ₹38,800 a month.
Though the rise in number is said to be proportional to awareness among patients and caregivers, it is limited to urban areas. “Dementia continues to be unidentified in rural areas. Only a few family members feel comfortable talking about and sharing their care-giving experiences as part of rising awareness, which helps others in similar situations. But stigma continues to be present and this delays the initiation of treatment in many,” said Ms. Sivaraman.
