Lanka Alzheimer’s Foundation (LAF) Celebrates 25 Years

Twenty-five years, or a quarter of a century is a long time. It is long enough for a small idea to become an institution, for a vision to become a reality, and for something that began with a handful of people to become part of the lives of so many others.

The story of the Lanka Alzheimer’s Foundation (LAF) is one of passion, grit and determination to create awareness about a disease little heard or understood in Sri Lanka.

Attending the second Alzheimer’s Disease International Asia Pacific regional meeting held in Singapore in 1999, Lorraine Yu and Tami Tamitegama made a commitment to set up an Alzheimer’s Association in Sri Lanka.

With the vision of setting up an Information and Service Center, however with no office of its own, LAF operated from Lorraine’s home for the first 10 years. As co-founders Lorraine and Tami pledged to personally meet all expenses of the Foundation until the Centre was set up. By the time their financial commitment finally ceased in 2011 with the opening of the state-of-the-art Service and Information Centre, they had spent nearly 6 million rupees towards the cause.

In the early years, Lorraine and Priya Fernando visited the homes of people with dementia, as well as the psychiatric wards of the Colombo South Hospital, Kalubowila and the National Institute for Mental Health.

They regularly interacted with persons living with dementia and their families, to create awareness about the disease and to give practical guidance on care. Caregiver Support Groups met once a month in Lorraine’s home to counsel family caregivers on supporting their loved ones with dementia and on handling behavioural and mood changes.

Speaking at the 25^th anniversary celebration of LAF recently, Loraine recalled how, “When we started, dementia was very different from what we understand it to be today. There was very little awareness and considerable stigma. Families often struggled in silence, not knowing where to turn or whom to ask for help. I remember thinking, this cannot continue!”

Quite rightly, at the outset Lorraine believed people living with dementia deserve to be understood, respected and treated with dignity. Their families and caregivers deserve information, support and, perhaps most importantly, the reassurance that they are not alone. That belief became the foundation of what she set out to build.

Lorraine acknowledges with deep appreciation those who believed in the vision when it was still only an idea; board members, staff, volunteers, professionals, donors and supporters and, most importantly, the families who trusted LAF at some of the most difficult times in their lives.

Says Lorraine, “Throughout my years with the Lanka Alzheimer’s Foundation, one principle was always at the heart of what we did: See the person, not the diagnosis. A diagnosis of dementia should never take away a person’s dignity, identity or humanity. Behind every diagnosis is a mother, a father, a husband, a wife, a brother, a sister or a friend; someone with a lifetime of memories, relationships, experiences and stories. And behind every person living with dementia there is often a family quietly navigating a journey for which they were never prepared. That is why the work of the Foundation has always been about more than dementia.”

The world has changed enormously since LAF began. Our understanding of dementia has evolved, research has advanced and awareness has increased. Founding the Lanka Alzheimer’s Foundation was not simply a professional undertaking for Lorraine; it was both her passion and purpose. “Over the years, it became an integral part of my life and shaped who I am today. There were difficult times, disappointments, obstacles and moments when I questioned whether we would succeed. But there was also the enormous satisfaction of knowing that something we had started was making a difference. When I look back now, I realise that the Foundation gave me far more than I could ever have given it.”

The Lanka Alzheimer’s Foundation was incorporated in 2001 and is an approved charity registered with the Ministry of Social Services. Lorraine stepped down from her role as President in September 2019. Having invested 25 years of her life into this worthy project, her hope for the Lanka Alzheimer’s Foundation is that it will continue to put people first and that those living with dementia will always be treated with dignity and respect.

Lorraine vision and critical role in the creation of the Lanka Alzheimer’s Foundations is etched in the history of the institution and is proof of the power of belief, commitment and hard work.