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SHINING HOPE FOR THE ELDERLY
Caring for elders with dementia is a challenge, because as dementia progresses, forgetfulness and confusion grow. It becomes more difficult to recall names and faces. Personal care becomes a big challenge as persons receiving the care ask the same questions repetitively, forget to clean themselves, lose their decision-making abilities, among other constraints. Families and caregivers struggle and despair and some even choose to give up but Pramila Bajracharya Thapa decided to take on the challenge of caring for senior citizens with Alzheimer’s and Dementia.
What started as a club for the elderly some years ago when she decided to drop her well paying HR Manager’s job with Care International Nepal and opened Hope Hermitage, has turned into Nepal’s first pioneer organisation caring for elders with Alzheimer’s.
Initially, the club was established as a place where senior citizens who have retired could share their knowledge and experience. The club and day care focused on information transfer and helped senior citizens express themselves and use their skills to create a new beginning for themselves. However over time, Pramila started receiving senior citizens with Alzheimer’s and Dementia. Elders with this progressive mental disorder come to a point where they don’t even remember how to wear their own clothes.
As cases came in, Pramila was the baffled by the extent of suffering among elders with the disorder. “At first we thought it was just old age and a disease that you get as you age, but with time we realised that Alzheimer’s isn’t an old age disease but rather a mental disorder that should not go ignored,” she says.
Currently approximately 78,000 people across Nepal have been reported to be suffering from Dementia, and experts fear that this is just surface data as most cases go unnoticed and cases are under reported. According to Alzheimer’s and Related Dementia Society (ARDS) Nepal, the number of people suffering from the disorder is expected to rise to 134,000 in 2030, and 285,000 by 2050. Pramila states that despite this there are very few doctors and nurses who have been trained to care for patients suffering from Alzheimer’s. It was for this very reason Hope Hermitage began caring for senior citizens with the disorder and she underwent training to help understand it better.
“It’s really not easy to care for seniors with Dementia as it gets really frustrating. There are times they say so many things to you and act so aggressively because they do not remember who they are and what they want, it gets especially difficult when they have sexual desires as they don’t remember who you are and just start touching you, “ she shares.
According to her, though it’s not their fault, it gets very difficult for caregivers to handle seniors with Alzheimer’s. “So we began training our caregivers on how to care for elders with such disorders”, she said.
The Hope Hermitage Senior Citizens home is a service based organisation founded in January 2014 by Pramila Bajracharya Thapa as Founder Chairperson with the support of four women as promoters.
WOW magazine interviewed Pramila to learn more about her extraordinary task of caring for senior citizens, who otherwise would not be receiving the quality care they require.
How did Hope Hermitage start?
I worked at an INGO for a long time as a Senior Manager and later was even promoted. It got really frustrating at one point because this wasn’t what I wanted to do with my life. Having a job is constricting as you are dictated by a job description, and that’s all you are doing. I did that for a long time, but I felt suffocated, it was so monotonous I just couldn’t live with it.
I always wanted to work for senior citizens as I was very close to my grandparents. Even as a child I spent time with my grandparents. My friends would go trekking or hiking while I would wait for the holidays so that I could spend time with my grandparents. I just wanted to be around them. So, serving senior citizens was an innate desire I grew up with and even before I began my career, I knew after a certain time I would work to serve the elderly.
I kept myself updated about the rights of senior citizens. I read a lot as well. This is my passion, my dream and something I have always wanted to do, so this is why I quit everything I was doing and started Hope Hermitage.
Could you tell us a bit about the centre?
Hope Hermitage is a service based organisation. We basically have elders who are looking for shelter as well as care and support in their old age as they don’t have anyone to take care of them. Basically the elders staying with us have their families abroad, whose children have migrated. Some of the elders here aren’t well and are suffering from degenerative disorders like Alzheimer and Dementia.
What usually happens is because the children aren’t in Nepal and their parents need care and support, they bring their parents to us.
You have a special focus on Alzheimer’s and Dementia, any reason for this?
When I started Hope Hermitage I had no idea about Alzheimer’s or Dementia, I knew about other communicable disease but not these. When I started with Hope Hermitage, I wanted to give senior citizens who are retired a space where they can share and exchange their knowledge and experience. Because in Nepal’s context, I looked at issues related to senior citizens from a development perspective. During this research period what I found was that the issues of senior citizens in Nepal was marginalised. No one was raising their issues.
I worked in the INGO sector for two and a half decades and I didn’t hear anyone raise their voice for senior citizens I always felt that the agenda of senior citizens was ignored in Nepal. Especially when I travelled abroad I would ask about the rights of the elderly and note how well their agendas had been addressed. I loved that they were so independent and free. It would be a dream come true for me to see a paralysed elderly in Nepal using their own electronic wheelchair, sipping beer, enjoying life like they do abroad. And after comparing the situation of senior citizens in Nepal and other countries I came to realise that the retirement age of 58-60 in Nepal was actually very young. And in today’s context, the retirement age does not match as people today have longer life expectancy. Think about it. When we finish our PhD’s we are in our mid 40’s and 50’s so are we only able to make a contribution to our nation for about ten years after earning our PhDs? Many things have changed and policies in Nepal need to change accordingly. During the research phase I found that there were lots of seniors who had just retired and gone into depression as all of a sudden they felt that they have become useless. Especially elders between the ages of 60-74 who are still very capable of living an active life, yet there are no re-recruitment policies and are stuck at home doing nothing even if they want to stay active. So, this was why we started Hope Hermitage as a club and day care centre. Our aim was to work on knowledge transfer, a platform where the elderly could share their knowledge and expertise.
For instance if someone one wants to write a book but they don’t know how to use a computer, than what we do is either teach them how to use a computer or we assign someone to type their story as they speak. But as we progressed, we started getting a lot of seniors who not only had gone into depression but also some had Alzheimer’s and Dementia. That’s how we came to know how serious an issue this was in the country.
How did elders deal with the trauma of the earthquake?
It is very difficult handling traumatised elders. Either you have to be passionate about working with elders, or you should have an inner strength to handle traumatised elders.
After the earthquake we brought 15-20 elders from the hospitals, as they were left homeless and they didn’t even know where they were, they didn’t know me, my staff, where to go or where they were from. All of a sudden their world had turned upside down, they were suddenly homeless. They would cry all night, they wouldn’t open the door, they would refuse to eat, wouldn’t wear the clothes we gave them, they would throw things around and would put whatever they had on walk out of here, sometimes they would even urinate in the beds and kick things around.
How do you cope with the Human Resource aspects for such specialised care?
In Nepal it is a big challenge. When we first began, we started by watching the elders who came to us, it was a learning process for us as well. After a while we decided to talk to doctors who have specialised in Dementia, but sadly we don’t have enough doctors with such specialisations. So far in Nepal just two doctors have specialised in Dementia. So, I consulted them and began my own research on how to care for patients with Dementia, because we literally do not have trained professionals in this sector. So, it was very important for us to begin from scratch and build our way up. This is the very reason we provide our caregivers with training on how to care for elders with Dementia and Alzheimer’s.
Even today so many people think Dementia is age related or a madness that comes with age, but it is not. There was literally no one to train us in the beginning. We observed the seniors who came to us, their behavior patterns, their requirements, and that was how we learnt. I googled and contacted Alzheimer’s Disease International and I began writing to them asking them for help. They told me they had a centre in Nepal and I also reached out to them.
Two years down the line, we have learnt a lot. We have received professional training and we have also started our own caregivers training program. All our caregivers today are trained to handle old aged patients with Alzheimer’s. The Director of Alzheimer’s Disease International visited us and praised our efforts.
Honestly, a lot needs to be done at policy level to solve the problems we have in terms of human resource at a national level. I personally feel that we can train a big chunk of women in Nepal who haven’t completed schooling, are not trained and are unemployed for various reasons. They just stay at home doing nothing though they have good potential. We are working on training such women for free and then provide them with employment as well.