The elegant lady who had spent countless hours caring for her family, entertaining guests, beautifying her home and garden was a memory but she was not dead. That was four years ago when I visited my grand aunt, Tessie in Minnesota. For many years aunty Tessie won the admiration of many in our family circle as she faced life with grace and courage. But the onset of Alzheimer’s Disease (AD) was a paradigm shift, as she who had held everything together had to let go of the reins and allow her family to take care of her until her demise two years ago. She was my grand aunt and through her affliction, I gained some insight into the downward spiral caused by AD.
Thereafter, I myself witnessed many loving folk fall prey to the dreaded disease which respects no rank, status, wealth or anything else for that matter. It is truly a silent stealer of lives, sucking the ‘marrow’ or individuality of a person and instilling fear and anxiety, along with a loss of identity. Finally, it sort of mocks us, the caregivers and loved ones who are left holding onto memories of the person who is still with us physically. The loss is profound, as the person is alive but their personalities and unique traits slip away day by day, until death in a literal sense takes over.
Many documentaries, books and poems and even a day has been dedicated to honour those who are afflicted by the disease and since its discovery in 1906 by Dr. Alois Alzheimer, many strides have been made to curtail its effects and support the patient and the loved ones. Sadly the ridicule faced by patients and the loss of dignity is solely due to the lack of knowledge about the disease in certain parts of the world. While AD could be considered an epidemic due to its global hold and stealthy spread, it is actually a severe form of dementia which causes progressive loss of brain power. The World Health Organization estimates around 50 million people around the world have dementia, with over 10 million cases every year. In Sri Lanka it is estimated that some 150,000 to 200,000 people have dementia and this figure is estimated to rise to a staggering half a million by the year 2050. While the symptoms are clearly visible in the elderly, it can also affect those who are younger. Dementia has a physical, psychological, social and economic impact, not only on the people who are afflicted but on their carers, families and society at large.
While my exposure to my grand aunt and a few others piqued my interest in AD, I was not able to gather more knowledge about it until an opportunity arose to visit the Lanka Alzheimer’s Foundation (LAF) which provides extensive support to people with dementia, their families and caregivers. Their burden is alleviated to a great extent by providing information, support and a network of services. For instance, LAF conducts an Activity Centre thrice a week, a memory clinic once a fortnight, provides information and awareness, offers a wealth of resource material and an innovative memory bracelet. Further, a Dementia Helpline has been established for additional emotional support and information.
Establishing a lifeline
LAF was incorporated in 2001 but since there was no office, the members functioned out of the family home of the founders. In the early years, Lorraine Yu, Founder President, who voluntarily stepped down last September, together with Priya Fernando, another volunteer and Director, used to visit houses and psychiatric wards which were designated to treat dementia patients, to provide support, work tirelessly to create awareness, provide information among other services. In 2011, the Office and Information Centre was opened after laborious fund raising efforts. LAF is considered a haven for those who are trying to come to terms with the changes that need to be implemented when faced with this dilemma. The current President of LAF is Prof. Shehan Williams.
My introduction to LAF was through the famous PR maestro who is also a Director and volunteer at LAF, Yasmin Cader whose mother had been diagnosed with the disease. Having gained first-hand knowledge of it, she continues to volunteer at the foundation.
Surrounded by luscious fauna and flora, the centre ensures security and serenity for the clients. “During these recreational periods we ensure that their mind is stimulated through various activities and they are given a reason to smile. We also believe that being forewarned is akin to being forearmed, thus we offer a wealth of information and mentoring to the immediate family of the client and the caregivers,” said Yasmin. Since the deterioration process is gradual, it is similar to fighting a prolonged battle with an unseen enemy which takes away the essence of your loved one’s life right in front of your eyes. “It is a traumatic journey and it is imperative to prepare the ammunition – which is ample knowledge about Alzheimer’s and the best way to combat it,” said Yasmin.
During my first visit, I was privy to an interactive session organized by LAF for the clients, who have been diagnosed with dementia. Lakmali Cabral, a Director at LAF who herself is a volunteer, kept me updated about the programme. “After a four week trial period we register the client. Thereafter, they are encouraged to come regularly for therapeutic activities which include singing, dancing, art work, interactive presentations and games like bingo among others which are designed to improve the quality of life of the person with dementia.” These activities are intended to stimulate clients and are conducted with a lot of love, care and support. Depending on the availability of space, LAF offers clients a maximum of two days a week to visit the Activity Centre. “We do not refer to them as patients but as clients, as we believe in giving them the dignity they deserve and we value the right to confidentiality at all times,” added she.
Another known face at LAF is Director and volunteer, Beverley Mirando who was keen to learn more about AD after her mother was diagnosed in 1998. In retrospect, Beverly recalls the tell-tale signs or symptoms of forgetfulness which she innocuously brushed aside as signs of old age in her mother. The realization of her mother’s acute dementia dawned on her after a family wedding when her cousins informed her of strange remarks made by the mother and this led to the medical tests which confirmed her condition. “Thereafter, it was a journey of trial and error in which we learned to adapt to the new way of life. After my mom was diagnosed, my friend the Founder President of LAF, Lorraine visited my mother and helped us tremendously to understand what she was experiencing and how to handle her behavioural changes. This was in early 2000, when she did home visits. Caregiver Support Group Meetings were held at her home down Havelock Road and I attended a few meetings when I was in Colombo on holiday,” said Beverley. That is the reason she made a commitment to support LAF when she returned to Colombo many years after her mother passed away. “I was also given an opportunity, while working in Singapore, to meet the office bearers of the Singapore Alzheimer’s Society and visited their office and Day Care Centre. When I returned to Colombo in 2017 I joined LAF initially as a Volunteer and then as a Director.”
LAF’s extensive support
Raising awareness and eradicating stigma
Educating the public on risk reduction
Dementia Helpline +94 11 266 7080
Secretariat/information and resource materials
Caregiver Support Group (CSG) Meeting
Website – www.alzlanka.org
Email – firstname.lastname@example.org
Facebook – Lanka Alzheimer’s Foundation
Lakmali mentioned that LAF organizes many special activities that create awareness, including the annual Dementia Awareness Campaign, fund raising activities and therapeutic activities. In addition to the regular outreach programmes, LAF conducts special activities to raise awareness especially during the World Alzheimer’s Month, September. Some consistent activities include the Annual Walk which has been conducted for the past 17 years and the Annual Run which has been conducted for six consecutive years. “Moreover, on World Alzheimer’s Day which falls on September 21st LAF creates awareness through public lectures. In 2018 we held an exhibition of art works by clients which was incorporated into creative collages by a volunteer attached to the Foundation. In 2019 at the invitation of Lanka Hospitals we joined their long term consistent education programme for health professionals including doctors and nurses. We also conduct a memory clinic every fortnight on a Friday from 9 a.m. to 12 noon and this is by prior registration via a phone call to the office as we only have the capacity to accommodate ten people per day.”
Lakmali explained that the memory bracelet is one of the most innovative and progressive tools which has been gifted to LAF clients. What makes it special is the fact that its lightweight, water resistant, hypoallergenic, tamper proof. For those who are unaware, Alzheimer’s patients tend to wander off and some of them are unable to speak, let alone remember details and the information stored in the memory bracelet is pivotal to tracing their family in case of such a crisis. The memory bracelet is similar to the white cane which is the distinguishing mark of a visually impaired person and one would inevitably volunteer to assist them if the need arises. “Even though it is unobtrusive, most people wish to keep the knowledge of their loved ones being afflicted with dementia a secret. Our mission is to eradicate the stigma surrounding the disease through stringent awareness programmes throughout the year and the memory bracelet is an effective tool in our effort,” said Lakmali.
LAF has partnerships with two universities, where medical students from two Medical schools, Ragama and Kotelawela Defense University, and speech therapy students from the University of Kelaniya visit the Centre to learn about dementia, facilitated by a Doctor, about LAF and to sensitize them on non-pharmacological approaches to dementia.
Value of a life
“LAF works with the community and for the community. Since our services are open to all and provided free-of-charge regardless of ethnicity or religious beliefs, there is an open invitation for anyone, who is concerned about their own memory or that of a loved one, to reach out to LAF through the various communication platforms available.”
LAF relies solely on the dedicated commitment of volunteers, staff and well-wishers who work together to ensure that they make an impact on many precious lives, lives that are of immense value despite dementia.