In conjunction with World Alzheimer’s Month 2019, Project We Forgot (PWF) and Homage in Malaysia collaborated to run the screening of Ninaivirukkum Varai (Till the last memory) with the goal of bringing the journey of dementia and its impact on caregivers to light.
By Jane Lei
Alzheimer’s disease currently impacts more than 50,000 people in Malaysia. Many young caregivers in the country are beginning their journey in caring for their loved ones with dementia. It is important that we as a community understand the impact of caregiving on families, and how to best help them in their journey. The screening of Ninaivirukkum Varai was our first step in connecting with the local community in Malaysia.
Parvathy is an independent woman, whose two children are married and living separately. When Parvathy is diagnosed with dementia, she realises that she has limited time to spend with her children before she forgets them. Her daughter, Aksharah, is distant towards her as Parvathy was very critical of her. Will Aksharah be able to resolve her differences with Parvathy before Parvathy loses herself totally to the illness?
Directed and produced by Yahssir M, founder of Millenia Motion Pictures, Ninaivirukkum Varai reflects how the team uses film to highlight societal issues in our communities.
The film event was followed by a post-show dialogue that highlighted the rising prevalence of dementia in Malaysia and its impact on family caregivers. Speakers that joined on the panel included Nisha Andrea Raj, Care Specialist from Homage, Dee from Caring with You and Yahssir M, the director of Ninaivirukkum Varai.
“My grandmother is living with dementia. There are so many questions I have about the condition. I sometimes don’t know what to ask… because it is so complex. The film has helped me understand it a lot better.”
Questions that came out of the discussions were mainly focused on two areas:
1. How do I manage challenging behaviours when caring for a loved one with dementia?
Remember, your loved one is not being difficult on purpose – these behaviours are symptoms of their dementia. Behaviours also have triggers. It’s important to learn what triggers these behaviours so you can either avoid them or better manage the responses when they occur.
Challenging behaviours often have a purpose. Your loved one may not be able to tell you what they want or need, especially in the later stages of Alzheimer’s. Consider whether they are fulfilled or struggling with boredom? Also find out if a particular behaviour is a sign that a particular need is not being met. Maybe they’re hungry, thirsty, or in pain?
2. How do I maintain engagement when I feel my loved one is no longer responsive?
People who have dementia may exhibit signs of apathy and withdrawal, such as falling asleep or becoming easily distracted. This can make engaging with a loved one particularly difficult.
Purposeful engagement is a person-centred approach to engaging the person with dementia so they can continue to participate in activities and contribute to what is going on around them. It utilises the person’s interests and strengths to tailor activities that the person is more likely to engage in.
“We don’t talk about it enough. I think if more people spoke about it, we will be more open to coming together to think about ways that we can better care for our parents.”
While this is a first step in building awareness of dementia and the journey of caregiving amongst the younger community in Malaysia, more needs to be done to increase reach and openess in driving conversations around the topic. We are looking forward to building more platforms for local voices to be heard. Based in Malaysia and have as story to share? Reach out to us here.