The first time Divya Sreedharan’s father wandered off was when he and her mother were travelling on a train going back to Kerala from Bangalore. He simply got off the train unnoticed by his wife. The family already knew he had dementia-related symptoms at that time. The police were called, and Divya’s husband set off to search for him.
“The worst thing was wondering if we would ever find him,” Divya says. “The worry of never knowing what happened to him was our greatest fear.”
But they did find him. Shaji Philip, a local hardware store owner in Palakkad, noticed an old man wandering around and invited him for tea; he couldn’t say where he was from or where he was going. Philip called the police after he found a card with his name and address in his clothes.
Divya’s father wandered off a second time too. Again, they were able to find him. Now, her mother embroiders name and contact information tags on his clothing, and the family never lets him travel unaccompanied.
Two recent cases of Dementia patients getting lost and finally found are fresh in the memory of Bangaloreans. The first case is that of ex-navy officer Ponnaiyan, who went missing from Domlur. He was an Alzheimer’s patient. After much publicity on television, newspapers and social media, he was found after three days on Bannerghatta Road.
Another senior citizen, 95-year-old Shankar Prasad Mishra, who was also a dementia patient, went missing from Kalyan Nagar. He was found near Lalbagh West Gate after three days.
What is dementia?
Dementia is a term for a variety of symptoms that causes a decrease in cognitive function serious enough to interfere with daily life. Alzheimer’s disease is the most common form of dementia. Some general symptoms include:
- Memory loss
- Difficulty recalling events or recognizing people or places
- Trouble planning and executing simple tasks
- Confusion with time and place
- Poor control of mood or behaviors.
Memory loss could be a symptom of many diseases, so if you’re worried about the mental health of a relative or friend, seek a doctor for a consultation. A certain degree of memory loss is normal as people age.
The last substantial study of dementia in India, the India Dementia Report 2010, prepared by Alzheimer’s and Related Disorders Society of India, estimated that there were 3.7 million dementia patients across India. Dr. Radha Murthy, the managing trustee at the Nightingale’s Medical Trust, Bangalore, estimates that there are about 32,000 people with dementia in Bangalore.
The household cost of dementia care was calculated in a study published in the Indian Journal of Public Health last year. The cost range, depending on the severity of dementia symptoms, is Rs. 45,600 to Rs. 2,02,450 in urban areas, and Rs. 20,300 to Rs. 66,025 in rural areas annually.
Age is one of the main risk factors for dementia. According to the Population Reference Bureau, eight percent of India’s population was 60 or older in 2012. By 2050, 19 percent of the population, that is 323 million people, will be 60 or older.
Does Bangalore have dementia-care facilities?
Nightingales Medical Trust operates the Centre for Ageing and Alzheimer’s, an 86-bed facility that is the largest residential care facility in India. The trust offers dementia training to patient’s family members, and has conducted awareness campaigns.
Radha Murthy says there aren’t enough resources to care for the amount of people with dementia. The lack of awareness is also a significant contributing factor.
What could be the reason for the government not to care about dementia? She says other issues, such as children and women’s health, malnutrition, and sanitation, have occupied the government’s attention. “The government hasn’t found it as a priority as such,” she adds.
The government has expanded geriatrics care as a recognition that that area is a major issue, but they haven’t focused on dementia yet. “Slowly they are opening their eyes,” she says.
S Premkumar Raja, honorary secretary of Nightingales, feels Bangalore has better care compared to the rest of India. “We can proudly say this is a sort of dementia-friendly city compared to other places.”
He says Bangalore has more professionals, better institutional care, and at least half a dozen memory-care clinics, making it a frontrunner for dementia care in India. But, he adds, it still isn’t close to the amount of resources needed to meet the demand. “We still have a long way to go,” Raja says.
‘Empowering caregivers is the key’
Swapna Kishore has been a caregiver for her mother, who has dementia, for more than a decade. She runs a website where she writes about her experience, and posts information about dementia resources.
“After the diagnosis, it took me a while to understand how dementia was impacting my mother,” Kishore said in an email to this journalist. “I did not realise in the beginning that I would need to make several changes in the way I interacted with her and supported her.”
She says being a caregiver can be emotionally and physically exhausting, and there should be more support for caregivers, either from governmental schemes, volunteer organisations, or commercial ventures.
“We need to create an environment where caregivers can talk openly about the challenges they face,” she said.
The lack of awareness can lead to dementia symptoms being characterised as stubbornness or crankiness, and “the person or their family may be criticised or shamed by friends and neighbours,” according to Swapna.
“Essentially, I see awareness as key because it creates the required foundation for diagnosis and care,” she said.
Ramani Sundaram is a visiting research scientist at the Nightingale’s Centre for Ageing and Alzheimer’s. She says the centre would be launching a dementia risk reduction program soon to keep elders socially active, cognitively engaged, and psychically fit. Similarly-themed programmes have experienced success in the West.
“We want to see if using these modules, using these principles can we also prevent dementia, or at least minimise the risk,” she adds.
What should you do if you find someone wandering the street?
With the development of social media, families now have another tool to help locate missing family members. As well as posting physical copies of “Missing Posters” around town, they use digital posts on social media to spread information through their network of friends.
The recent missing person case of Mr. Ponnaiyan, an Alzheimer’s patient who had wandered off, demonstrated the ability of using the Internet to quickly spread awareness and marshal the resources of the Bangalore community. He was found after three days partly because of the awareness spread across different mediums, including social media.
- If you find someone who appears lost or disoriented, and is exhibiting symptoms of dementia, call the police.
- Check his/her person for any identifying markers, such as tags on clothing, or any form of an ID cards or bracelet or phone numbers. Any of these identification aids could help the police successfully return the person home. Social media can also be used as a tool to post it.
- Posting the details on social media can help people who know the person identify and reach out.
Common problems for people with dementia
Each person can be affected differently by dementia. But here are some general tips on caring for a person with dementia.
- It may be difficult, but maintain a caring attitude. Talk in a calm manner, and keep sentences short and simple.
- Give the person adequate time to understand what you’ve said.
- People can easily register negative body language so avoid sighing or raising your eyebrows when irritated.
- Keep the layout of the home environment the same so it is familiar to the person with dementia. This prevents the sense of confusion or disorientation.
- All the things you would not normally consider a hazard, such as loose rugs, long electrical cords, medications, or hot water bottles, could be dangerous for those with dementia. Get rid of tripping hazards or store these items somewhere safe.
- Make sure all exits are properly locked to prevent wandering.
- It’s probably best to avoid travel if you notice negative behavioral changes such as delusions or paranoia.
- If you do travel, make sure the person has identification. This could be a bracelet, or important information stored in a wallet or purse such as their name, address, and phone number of relatives. Or even name and phone number stitched in the dress.
Can dementia be treated/ cured?
There is no cure for the dementia, however disease conditions can be improved with proper medication. Psychotropics, anti-depressants and anti-anxiety medication are generally prescribed by the doctors, but never self-medicate the patient.
A controlled environment at home can help the patient and the relatives. Physical, emotional and mental activation with the help of occupational therapists can help the patients. Help is available for a number of physical problems such as incontinence, difficulties in consuming food and problems in lying down.
Here are some frequently asked questions answered by the Bangalore chapter of Nightingales Trust.
Helping the elderly who once was a source of strength and support to your family but now is losing his/her own self could be challenging, but not impossible. Just trust your heart and let it lead, and everything will be fine.
Get help for people with dementia
There are many institutions that help people in dealing with dementia patients. There are online assessment tools available to check whether one has dementia. There is a support group and mailing lists run by Nightingales Trust, though Citizen Matters could not verify whether it was active enough. Here are some resources to which you can reach out for help, incase you have a dementia patient. (Reource courtesy: http://dementia-care-notes.in )
|Nightingales Medical Trust / Nightingales Centre for Ageing and Alzheimer’s:
#8P6, 3rd-A Cross, East of NGEF Layout,
Kasturinagar (Next to BWSSB Water Tank), Banaswadi,
Bangalore – 560043
080 – 42426565 080 – 65356535
firstname.lastname@example.org, email@example.com, firstname.lastname@example.org
Ms. Chitra Kamat: 91-9243727215
|Nightingales Dementia Care,
O’Shangassey Road, Opp. Sita Bhateja Nursing Home, Akkithimmanahalli, Shantinagar
Bangalore – 560025
080-41248448 OR 080-41248449
|NIMHANS, Hosur Road
Bangalore – 560029
Phone: 080-26995001/5002, 26564140, 26561811, 26565822
NIMHANS conducts weekly OPD clinic on dementia.
Manipal Hospital, Airport Road, Bangalore
|Spandana Nursing Home
4th Block, Rajaji Nagar, Bangalore – 560010
Phone: (080) 23153500, 23154544
St.John’s Medical College Hospital
|Bangalore Baptist Hospital
Offers palliative home care
Bellary Road, Hebbal
Bangalore – 560024
Phone: 080 – 22024395 or 23330321-24 (Extn. 395)
|The RVM Foundation
#97, Old Airport Road,
Kemp Fort Mall, Bangalore – 560 017
Helpline: 9845000600 / 9739544444
This is run by Nightingales Medical Trust and Bangalore City Police.
Ground Floor, No. 1, Infantry Road,
1090 (toll-free)/ 080-22943226
|Helpage India, Bangalore
113, Royal Corner
No 1 & 2 Lal Bagh Road
Bangalore-560 027 Karnataka
Helpline: 1800-180-1253 (tollfree)
383, 33rd Cross, 17th Main
Jayanagar 4th T Block
Opposite BES Ladies Hostel
Bengaluru – 560 041
Helpline: 080- 4151 1307, 4166 1122