• The Lanka Alzheimer’s Foundation on the importance of awareness and education

Alzheimer’s disease and other forms of dementia are growing public health concerns, especially as populations worldwide age. The effects of Alzheimer’s go beyond the individual, touching families and entire communities, who often struggle with the medical, emotional, and social consequences of the disease. 

In Sri Lanka, the Lanka Alzheimer’s Foundation (LAF) has been a beacon of hope, providing support, raising awareness, and advocating for better care and understanding. As we observe World Alzheimer’s Month and World Alzheimer’s Day taking place next week (21), The Sunday Morning Brunch sat down with members of the LAF to take a look at the condition from multiple perspectives – medical, social, and the role that organisations like LAF play in driving awareness on an issue that is likely to affect increasing numbers of people as they age.

Defining Alzheimer’s disease and dementia

To put it medically, Alzheimer’s is a progressive neurodegenerative disease that affects memory, thinking, and behaviour, while dementia is a broad term encompassing a range of symptoms affecting memory, thinking, and social abilities that are severe enough to interfere with daily life. 

Alzheimer’s disease is the most common form of dementia, accounting for approximately 60-80% of dementia cases. It is a specific degenerative brain disease characterised by the accumulation of abnormal protein deposits, known as plaques and tangles, which disrupt communication between brain cells and lead to their death.

While it is often associated with ageing, dementia, including Alzheimer’s, is not a normal part of growing old. University of Kelaniya Faculty of Medicine Department of Psychiatry Professor and LAF President Shehan Williams noted: “People think memory and intellect decline naturally with age, but that’s not always true. If you don’t get these conditions, you can live up to 100 or more with a sharp mind.” 

Addressing Alzheimer’s, the most common cause of dementia, Prof. Williams said: “Unfortunately, we still haven’t found a cure for Alzheimer’s, so we focus on supporting the person and, where possible, preventing progression. The onset of Alzheimer’s is marked by the brain ageing faster than usual, leading to neuron loss. Over time, these changes manifest as symptoms that both those with dementia as well as their families can recognise but often sweep under the rug as signs of ‘getting older’.”

“Symptoms can include memory issues, including forgetting recent events while remembering things from the distant past, losing items frequently, and repeating themselves often,” Prof. Williams said, stressing that early detection was crucial, as medication and lifestyle interventions could sometimes slow progression.

While age is the biggest risk factor, it isn’t the only one. Women are disproportionately affected, although researchers still don’t know why. Lifestyle choices such as smoking, high blood pressure, and even environmental factors like air quality have also been linked to an increased risk of developing dementia, a sobering fact in light of Sri Lanka’s ageing population. 

But again, Prof. Williams highlighted that signs of dementia and even formal diagnosis were by no means a death knell. “There is evidence that keeping physically and mentally active – whether it’s dancing, walking, or learning new skills – helps delay the onset of dementia,” he said.

The Lanka Alzheimer’s Foundation

One key struggle when it comes to dealing with Alzheimer’s disease and other forms of dementia is that there is very little support to be had, both for those dealing with dementia and for their caregivers. This is compounded by the fact that dementia is seen as one of the most serious conditions an elderly person can have, which serves to build a stigma around the condition. This is where the LAF looks to help. 

Founded in 2001, LAF has played a critical role in addressing the needs of individuals living with Alzheimer’s and other forms of dementia, along with their families and caregivers. A registered charity, LAF’s mission is to raise awareness, provide care, and advocate for people affected by dementia across Sri Lanka. 

The LAF was established by several compassionate individuals, chiefly Lorraine Yu and Tami Tamitegama, who recognised the growing need for support in a society where dementia was largely misunderstood. It is also a member of the world body Alzheimer’s Disease International (ADI) which represents 100 member associations from countries around the world. 

LAF offers a range of services, including cognitive assessments, respite care, and a day centre where clients can participate in activities designed to stimulate their cognitive abilities and promote social interaction. These services are vital, as they help not only the individuals diagnosed with dementia but also their caregivers, who often experience significant emotional and physical strain.

LAF Secretary Lakmali Cabral stressed the importance of education and awareness in the fight against effectively managing Alzheimer’s and dementia. “People need to know the early signs and they need to seek help as soon as possible. The longer they wait, the harder it becomes to manage,” she said. 

Cabral is deeply committed to raising awareness and improving access to care, particularly for families who are often unsure how to navigate the complexities of the disease. To this end, LAF conducts free weekly memory screenings presided over by medical professionals so anyone can come in to test their memory. 

However, Cabral stressed that since LAF was not a medical institution, it did not provide any medical advice or recommendations, and once the screening was complete, clients were encouraged to visit their own doctors to discuss their results. 

LAF also strives to build a community not just for those with dementia (LAF’s clients are not restricted exclusively to those with Alzheimer’s), but for their carers as well. LAF Director Beverley Mirando explained that for several years now, LAF had held bimonthly support groups for carers and caregivers in recognition of the immense emotional consequences dementia has on the families of those with dementia and their carers. 

“These caregiver support groups used to take place physically, but over the last few years, they have transitioned to become virtual support groups and are a space for caregivers to talk about what they are experiencing with others who are going through similar experiences, as well as to share information and resources with each other,” Mirando explained.

Caregivers are often the unsung heroes in the battle against Alzheimer’s and LAF ensures they have a community to lean on. “Caregivers are under immense stress,” added Cabral. “Our support groups are a safe space for them to express their frustrations and fears. It’s important that they know they’re not alone in this.”

Another core service of LAF is building community for its clients. One way it does this is through its day centre, which is open for clients three days a week (Mondays, Wednesdays and Fridays) and serves as a place for clients to come, meet other people of similar ages and interests, and also keep themselves active physically and cognitively. 

One of the key means of slowing the progress of dementia is physical and mental activity, and the day centre engages clients in both physical activities like dancing as well as cognitive and motor skills exercises like mind games and arts and crafts. The day centre also sees clients spend their day there (from 9 a.m. to 3 p.m.) in a supervised, engaging environment, giving their carers time to recharge and maintain balance within their own lives and routines.

An unexpected and damaging stigma

One of the primary objectives of LAF is to remove the stigma associated with dementia. In many cultures, including Sri Lanka’s, dementia is often misunderstood, with families feeling ashamed or embarrassed to admit a loved one is affected. 

LAF seeks to break these barriers by fostering open dialogue. Prof. Williams noted: “We need to recognise that dementia is a medical condition, not a reflection of a person’s character or upbringing.” 

LAF also runs numerous awareness campaigns to educate the public on dementia, dispelling myths and providing accurate information on the disease. Its outreach extends to rural areas, where healthcare access is limited and awareness is low. Over the years, LAF has worked closely with international bodies like ADI to align its efforts with global best practices.

The social dimension of Alzheimer’s disease cannot be overstated. Families, caregivers, and communities must cope with the realities of a condition that slowly robs a person of their memories, independence, and sense of self. Prof. Williams emphasised that caregivers often faced the heaviest burden as they navigated the complex emotions of watching a loved one’s physical and mental decline. 

Caring for someone with Alzheimer’s is both physically and emotionally exhausting. Many caregivers report feelings of guilt and isolation as their lives become consumed by the demands of managing the disease. 

This is where the support of organisations like LAF becomes invaluable. By offering a community of understanding, advice, and practical help, it gives caregivers the tools to cope. “The key thing about caregivers is that they can also become distressed and depressed. They need to understand the condition, seek support, and look after their own well-being too,” Prof. Williams noted.

However, stigma remains a significant issue in many societies, including Sri Lanka. Dementia is often seen as something shameful, with families keeping affected members hidden from the public eye. This adds to the emotional toll on both the person with dementia and their caregivers. Mirando stressed the need for societal change: “We must start seeing Alzheimer’s as a health issue, not a social taboo. The more we talk about it, the easier it is for families to seek help.”

Raising awareness about the early symptoms of dementia can also help reduce stigma. When the public understands that dementia is not a normal part of ageing but rather a disease with specific symptoms, it fosters empathy rather than judgement. Simple actions like encouraging mental and physical activity, seeking early medical advice, and providing emotional support can make a significant difference in the lives of those affected.

With September being Alzheimer’s Awareness Month, LAF has already completed several initiatives this month to help build awareness of the condition. The Lotus Tower was lit up in red on 1 September to mark the start of Alzheimer’s Awareness Month. 

LAF’s annual ‘Run to Remember’ – a 5 km run for awareness – took place on 7 September and yesterday (14) saw its ‘Memory Walk 2024’ take place. In November, LAF will also host its annual ‘Memory Shop’ – a sale of factory garments donated by various members of the Sri Lankan apparel industry as a fundraiser for LAF.

It takes a village

As the prevalence of Alzheimer’s and dementia continues to increase, so does the responsibility of society to address the challenges associated with the disease. While medical research is ongoing, the focus for now remains on early detection, support, and raising awareness. 

Cabral offered a hopeful message: “Despite all our efforts, we must realise that anyone can be vulnerable to dementia. Our responsibility is to support them as much as possible and help them lead a reasonable quality of life for as long as they can.”