Shortage of caregivers, dedicated old age homes hits families of Alzheimer’s patients

A year after 70-year-old Shanta Rane (name changed on request) was diagnosed with Alzheimer’s disease,  she couldn’t recognise her family members.

Her daughter Sheela, 45, is a homemaker who’s been taking care of her mother for the past two years.

Rane helps her mother bathe, along with dressing, feeding, and making sure she takes her medicine on time. She also reads to her and takes her out for short walks. Sheela is the only person the septuagenarian can now recognise.

“But everything depends on her moods. On a good day, she lets me help her and agrees to trust me. But sometimes, she gets quite aggressive about eating food and taking medicine,” says Sheela.

Little to lean on
A study conducted in Mumbai shows that 1.6% of people above the age of 65 suffer from Alzheimer’s. In western countries, with life expectancy being higher, the percentage of population suffering from the disease is eight to 10%.

However, with very little awareness and even fewer options to help those diagnosed with Alzheimer’s in Mumbai, the onus of handling the patient falls on the caregiver or the family. “It is very tough for caregivers, as they have to face mental, physical and financial strain,” says Dr Shirin Barodawala, honorary secretary, Alzheimer’s & Related Disorders Society of India (ARDSI), an organisation devoted to Alzheimer’s patients and their
families.

Dr Barodawala, who conducts workshops for caregivers, awareness programmes for the general public, general physicians and even high school children, explains, “A large part of our job includes counselling for caregivers as they have a lot of questions — where to admit the patient, where to get daycare, how to keep them occupied, and most importantly, where to find a home caregiver,” says the neuropathologist who runs a memory clinic at JJ Hospital, Byculla.

A helping hand
A home caregiver is a person trained to help a patient with Alzheimer’s. A domestic servant cannot handle such patients, who are prone to be suspicious and make a lot of allegations. For instance,  an Alzheimer’s patient might forget that he has had lunch and will demand food.

“We train the home caregiver to deal with such situations. For instance, if the patient usually has two rotis for lunch, give him one and give the other after some time,” explains Dr Barodawala, adding that ARDSI, in collaboration with SNDT Churchgate, will commence a six-month home caregiver’s course for Alzheimer’s patients next year.

Dignity Foundation runs a dementia daycare centre at Dadar, Chembur and Neral, where patients are offered vehicle pick up and drop, and lunch, and kept occupied with occupational therapy. This offers family members a break from a 24-hour care regimen. 
Support groups for Alzheimer’s patients are very popular abroad.

“In Mumbai, Silver Innings Foundation and ARDSI hold one such support group at Holy Family Hospital, Bandra, on the last Saturday of every month, from 4pm to 5pm. A clinical psychologist, psychiatrist, social workers and family members attend the meetings. “The group caters to people from Andheri to Mahim, but people come from as far as Thane, as there is no support group in that area,” says Sailesh Mishra, founder-president of Silver Innings.

For more information, contact ARDSI on 2351 3253 or the Silver
Innings help desk on 99871 04233