Reaching out to silent sufferers

Predicament of Alzheimer’s patients during COVID-19

By Rochelle Palipane Gunaratne

While to us, who are in a frame of mind to reason, make constructive choices and go about our usual business, the current situation seems overwhelming, one cannot fathom the fear and anxiety faced by scores of individuals suffering from dementia. Kelaniya University, Faculty of Medicine, Professor in Psychiatry and Consultant Psychiatrist, Lanka Alzheimer’s Foundation (LAF), President, Dr. Shehan Williams laid bare the dire straits of patients and caregivers due to COVID-19 and the manner in which the suffering can be alleviated to a certain degree in order to mitigate the continuing direct and indirect adverse repercussions of the pandemic. We must reform and better integrate our health and social care systems so that they provide quality care for people affected by dementia and are resilient against future catastrophic events.

Tested to the limit

According to the recent Alzheimer’s society global report, a study conducted in the west, showed that people with dementia accounted for the biggest spike in excess deaths. Even without including deaths attributed to the Coronavirus, twice the number of people with dementia died at the pandemic’s peak, compared to what would normally be expected.

The challenges presented by dementia itself may also have contributed to difficulties in stopping the spread of the virus. A person living with dementia who has memory problems or confusion may struggle with the guidelines and rules introduced to reduce the risk of infection by the Coronavirus. Measures such as frequent hand washing and social distancing to reduce the risk of catching the disease may be hard for some people with dementia to follow.

We have also heard from care professionals and people affected by dementia that isolation, depression, and not understanding why loved ones are no longer visiting could have contributed to a loss of skills, independence and, ultimately, premature deterioration in their dementia. This could include losing the ability to speak and communicate their symptoms, or even stopping eating and drinking, leading to a greater number of deaths among people with dementia.

The findings also show that the most common symptoms that people living with dementia reported during lockdown were difficulty concentrating (48%), memory loss (47%), and agitation or restlessness (45%). The most common symptoms that carers reported in their loved ones with dementia were memory loss (54%), difficulty concentrating (47%), agitation/restlessness (49%) and stress or depression (46%).

Another possible explanation for the increased morbidity and mortality in persons with dementia is that when health service resources were tightly stretched, people with dementia were not prioritised for treatment and care. Given that diagnosis of health problems in people with dementia can be particularly complex, it is possible that more remote working by GPs and primary care teams made it harder for people with dementia to get help when they needed it.

Tragically, the effects of the pandemic go beyond this terrible death toll. I have seen and heard the devastating impact of social isolation on people with dementia. Without family and friends able to visit, people’s symptoms have worsened much more quickly and connections to their loved ones, sadly even those who play a vital caring role, have been lost. And it is not just people with dementia who are affected. A distressing picture is the impact on those often overlooked – the army of unpaid carers, struggling to care round the clock for their loved ones, exhausted and ‘burnt out’ with nowhere else to turn.

The task of addressing an issue as complex as dementia in these unprecedented times seems daunting, nevertheless it cannot be shelved as the respect and dignity given to dementia sufferers and the support rendered to all concerned is vital as they continue to be the hardest hit in these tragic circumstances.

Window of opportunity

The devastating impact of COVID-19 on people affected by dementia cannot be undone. However, there is now a window of opportunity for action to mitigate against further effects of the virus and to help those who are recovering.

People affected by dementia have experienced significant harm from the restrictions to social contact and reduction in services over this period. Decision makers at all levels must recognise that informal carers are an integral part of the care system and social contact to people with dementia is invaluable, and give these due priority.

The government needs to set out a clear strategy to enable people, affected by dementia, to recover from the effects of the pandemic, inclusive of rehabilitation to counteract effects on cognitive or physical functioning, support for mental and physical health, and speech and language therapy.

Recognising the key role that informal carers play in the lives of people living with dementia, the government must take action to support people in this role.

COVID-19 has exposed how our fragmented social care system fails to support people with dementia. The need for social care reform is clear and urgent; it must be addressed within this parliamentary term. We know that it will be impossible to put in place an entirely new social care system overnight.

However, we must put in place the necessary strong foundations now. The social care crisis is a dementia crisis, specially since people with dementia are estimated to rise from around 200,000 currently to around half a million as Sri Lanka’s population ages in the coming years. Therefore it is essential that their needs are given priority, by providing love and company, helping with eating, keeping cognitive and communication skills sharp, grooming and recreation and also advocacy and timely detection of changes in health. The Alzheimer’s report also suggests that without visitors or excursions, patients will feel more lonesome and bored and this may be expressed through agitated behaviour or social withdrawal. Also, the lack of physical activity may lead to loss of strength and the lack of cognitive stimulation may lead to greater cognitive decline.

The Lanka Alzheimer’s Foundation (LAF) offers personalised support to anyone with dementia, their carers, families and friends and it connects people to a whole range of dementia support, by phone, online and face-to-face (when safe to do so). It’s free and puts them in touch with Dementia Advisers who offer the support they need, from local help to telephone and online advice.