The primacy of caregiving in Alzheimer’s

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By Willie Mendis Dr. Willie Mendis is currently Professor Emeritus at the University of Moratuwa. His professional career includes that of Vice-Chancellor at the University, Minister at our Embassies in USA and Canada and as Chairman, Urban Development Authority. He is happy to bring to light with the public what caring for a person diagnosed with Alzheimer’s disease entails and shares his story on 18 September, 2014 at the Lanka Alzheimer’s Foundation auditorium at 6 p.m. Please call 2667082 for reservations. Entrance is free. He says caring for a person diagnosed with Alzheimer’s disease is truly a journey that has no other to be compared. The world over, its relevance has ascended to match with the pace of search for drugs that can cure, prevent, or slow the disease. The realisation that care-giving will be the overwhelming need has given rise to a variety of approaches in its support for providing dignity to the person with this incurable degenerating illness. Its focus in Sri Lanka is emerging speedily. The Lanka Alzheimer’s Foundation (LAF) has become a key frontline provider. It has touched me in my own role as a caregiver. “My awareness to Alzheimer’s was zero until I was told about it six years ago in 2008. Since then I have been a caregiver. My own professional background suggested at the time that I look for an ‘instruction manual’, or, a ‘one-stop-shop’, that will give me the nuts and bolts of care-giving. Unfortunately, none could be found anywhere. Thus I began my on-going journey of caring in the best and devoted way that I could. This journey has no parallel to any other that I have traversed to date in my 72 years. “As the seriousness of care-giving began to sink in, my immediate reaction was to learn about Alzheimer’s disease. The knowledge gained was extensive; but its fundamental was that it was incurable and that its symptoms progressed over time. The underlying link of the symptoms of the disease was clearly with the brain. I soon became aware that a rogue protein called ‘beta-amyloid’ formed plaques between the brain’s nerve cells (neurons). Another called Tau created neuro-fibrillary tangles inside these cells. They kill the neurons, causing the electrochemical communication between them to collapse. Thereby, the brain function becomes severely affected progressively. “Meanwhile, the information sourced by me on the seven stages of the disease and of the risk factors associated with it, impressed upon me to be sensitive to the ‘forthcoming’ symptomatic changes. I have been told that ‘Caring is overwhelming, stressful, exhausting and emotionally wrenching’. “On the other hand, I am very much conscious that a person with Alzheimer’s disease is still a person. I do know now that although memory and cognitive abilities are impaired, the person still has feelings, experiences emotions and gives and receives love and affection without reservation. Nonetheless, it is truthful that the sudden overload in caring does create those stressful moments. “It is in the aforementioned backdrop that a caregiver feels isolated. I was persuaded to visit the newly built premises of the Lanka Alzheimer’s Foundation (LAF). The visit was an eye-opener. I noted that it had many limitations when contrasted against what I had learnt from the information compiled via the internet, print media and during overseas visits. On the other hand, it had the basics, including physicians who visited to do memory screening tests and above all a vision. It’s small, but kind and devoted volunteers were its greatest asset. “The latter enables a caregiver to get a respite. However, it should not mean life as the caregiver will become wonderful, because its challenges evolve daily. My overall perception is that LAF no longer makes me feel isolated. “It is an undeniable fact that Alzheimer’s with progressive symptoms will eventually require 24/7 care-giving. Consequently, it could mean that the searchlight may also focus inwards on caregiver burnout. It is in the latter context, that sharing of experiences and learning from same, will be helpful. Such an opportunity can be by the getting together of caregivers as one option. Alternatively, LAF with its partners can facilitate the identification of guidelines for quality care which includes the fallout for the caregivers. Its outcome can hopefully lead to the build-up of the workforce with skills to provide quality care. This is a vacuum that has potential for careers with appropriate certification,” he said. He added that much needs to be done and trusts that his story will be a game changer in advocating care-giving.