* He did not understand why he was not being allowed to step out, nor why everyone was cooped up inside the house
* In these critical months when people have not been able to physically meet counsellors or doctors, health experts have been reaching out to people who are seeking help
****
As the pandemic raged across India, Shikha Das was at her wits’ ends. She found it increasingly difficult to manage her 76-year-old father, who had been diagnosed with dementia five years earlier.
He did not understand why he was not being allowed to step out, nor why everyone was cooped up inside the house. “He would simply not stay indoors,” says Das, a finance professional living in Kolkata. “He would not eat. He would not take a bath. He’d rebel against everything that we would try and get him to do.”
The caregiver who usually looked after the septuagenarian was away since the beginning of lockdown. “Along with the demands of work from home and the increased chores, I felt thoroughly inadequate when it came to caring for Baba,” she says.
This was last year, during the first wave of Covid-19. Das was desperately looking around for help — till she chanced on a YouTube channel that gave her some practical tips on how to manage people with dementia and related problems. She logged in — and the tips yielded results. “We tried following their advice, tried changing his diet, and very slowly we saw some improvements,” Das recalls.
The Internet, she soon realised, was full of videos that lend a helping hand to caregivers. “I had never imagined YouTube had such resourceful videos for people like us. Instead of Netflix I started binge-watching Abe’s Garden: Alzheimer’s and Memory Care Center of Excellence . I also found Teepa Snow’s videos very helpful,” she says.
Safety Net
In these critical months when people have not been able to physically meet counsellors or doctors, health experts have been reaching out to those seeking help. Organisations such as Alzheimer’s and Related Disorders Society of India (ARDSI), Kolkata, started convening webinars in 2020. One novel component of these webinars was video demonstrations addressing common practical issues caregivers have been facing while tending to a dear one living with dementia — such as on how to help them eat, brush their teeth or put on a shirt.
“The idea is to involve the person living with dementia in the task and allowing them the satisfaction that they did the job themselves. We should not step on their self-respect and sense of identity. We must help them reclaim it,” Nilanjana Maulik, national coordinator and secretary, ARDSI Kolkata, explained in one of the webinars.
The diagnosis of Alzheimer’s or dementia is earth shattering for a family. The psychiatrist’s office does its job with the diagnosis. Then comes the turn of the family, which is often quite lost on what has to be done next. This is where communications with care support groups and training in handling relevant aspects of caregiving for people living with dementia help families. Although these resources were delivered in-person earlier, the pandemic has pushed many to go online. The various chapters of ARDSI and Bengaluru-based Nightingales Medical Trust (NMT) offer training on a rolling basis as and when they receive requests for them.
Dementia training courses vary in intensity and scope, range over 10-12 hours and are usually spread over a week or more, yet are moderately priced as the intention is to drive information (the NMT training programme, for instance, is for ₹500). Programmes focus on equipping home caregivers on how to control behavioural and psychological symptoms of dementia, effective ways of communicating with persons living with dementia, and ways of providing quality care and support.
“In India, the caregiving situation for people living with dementia is very family-oriented. There are not many care facilities available. Given our cultural conditioning, families often take over the lives of the members living with dementia. It need not be so. While there are laws and ethics governing those living with dementia, caregivers too have their rights and need for well-being. Through our varied courses for both professional and family caregivers, we try to inform and educate people on these aspects too,” Maulik says.
New programmes
ARDSI-Kolkata is currently designing a new programme in line with the one delivered internationally by their UK counterpart, which is slated to become available in June.
“Our training for home carers is highly customised for the families attending it. It’s an advanced and specialised course for which we gather specific information through a questionnaire before the training. Often various members of the same families participate. We cover a lot of ground and questions and answers are thoroughly case-specific because no two persons are the same,” Maulik explains.
The experts handle disparate questions from family members because people with the same diagnosis may behave differently. While some living with dementia may be reluctant to get out of bed or go for a walk, others may find it challenging to stay indoors. The dynamics of families that have working members who are busy or travel a lot will be different from others.
To address such questions and concerns, NMT too has now gone online with their training on dementia and eldercare for home caregivers. Swati Bhandary, senior manager at NMT, says, “Online training or awareness courses on dementia care at NMT is an offshoot of the Covid-19 pandemic and is a very suitable option for family carers. As an organisation, our challenge is mostly to reach out to the people who would benefit from these training.”
The limited budget on the part of these volunteering organisations often prevents them from taking appropriate initiatives to spread information. The lack of awareness around the availability of these training contributes to their inaccessibility. The organisations have largely been publicising their programmes through their Facebook pages and WhatsApp groups for members.
The US Alzheimer’s Association, a leading voluntary health body that accelerates focus on research, support and care for people living with Alzheimer’s, includes useful guidance on risk reduction, early detection and maximising quality care on their website . Early detection should be a prerogative in India as well and more professionals should be equipped to observe and run through a checklist that promotes it. To this end, for those with a degree in social work or sociology, the National Institute of Mental Health and Neurosciences (Nimhans) in Bengaluru runs a 25-hours, self-paced blended online course that runs across three months .
Latest reports have recorded that death among Alzheimer’s patients increased by 16 per cent during the pandemic globally, a time when professional caregivers were mostly unavailable and a lot depended on close families. Both Maulik and Bhandary point out that the pandemic has worsened the conditions of people living with dementia and added to the stress that caregivers undergo because direct or physical caregiving has been reduced, affecting cognitive levels. To top it, comorbidities of many people living with dementia could not be adequately addressed during the pandemic. Since social interaction is one way of helping those living with dementia, organisations such as ARDSI and NMT arrange day-care centres and activities. The closure of such centres because of the pandemic has also affected the well-being of those living with dementia.
With the number of people diagnosed with dementia steadily increasing in the country, there’s an urgent need for spreading basic awareness around the condition. The baseline for this is very simple, though: It starts with effective and respectable communication.
Swati Sanyal Tarafdar is a freelance journalist
Free online resources on dementia care You need to create a free account on these websites to access their courses: For home caregiver dementia trainings, contact: NMT: training@nightingaleseldercare.com Phone: +91 80 42426565 ARDSI: Phone: 9747415526, 8075654150 Email:
ashlyardsi@gmail.com ARDSI-Kolkata: Phone: +91 9331039839, +91 9830460306, +91 8232014540 Email:
nilanjana.maulik@gmail.com
Footnote: Hyperlinks used in the article
https://nimhansdigitalacademy.in/diploma-in-community-mental-health-for-psychiatric-social-workers/
http://ardsikolkata.org/?page_id=5218
https://www.youtube.com/user/ardsikolkata
https://ardsi.org/wp-content/uploads/2021/02/DimentiaSkillCareTraining.jpg
