People with communication difficulties are often already isolated and vulnerable even prior to the current pandemic. For many their only social contact might have been the one dementia coffee morning, their local shopkeepers, the visits from the health and social care professionals, or perhaps their paid carers. Some might have children and grandchildren, or friendly neighbours, but these might actually also be their lifeline for care. Many of these lifelines are being removed or limited in the current COVID-19 crisis. This is of course a measure being undertaken to keep people safe, but for many this may also put them at risk.
There is a very real concern that many of our clients with communication difficulties may simply not understand what Coronavirus is, the risks and the current government recommendations. We work with people with stroke or dementia related communication difficulties who often don’t understand spoken or written language. We work with people who may have difficulties in judging or weighing up risks. They may not understand this invisible threat- you can’t touch or see COVID, it is quite an abstract concept. This means they may also not understand what recommendations mean for them and their families.
Many of the people we work with have families and carers who support them, who are trying to discourage them from going out. Who are trying to explain this invisible threat. One family member told me she was trying to compare it to the Second World War- but you could see that threat, hear the planes and see the bombs. Another told me that she tried to stop her mum going out on her daily bus ride – but her mum (who has a compulsive daily routine) became angry and started shouting. Another wife told me she didn’t want to put herself at risk of aggression. Despite their family members perhaps lacking the decision-making capacity to understand the risks and therefore one could say it would be in their best interest to detain them at home- is this even feasible? Someone asked what they could do for their loved ones if this lockdown is enforced – would their loved one be arrested or sectioned if they didn’t follow the recommendations?
Many of those with significant swallowing difficulties- who may experience silent aspiration (fluids going into their lungs) will already have an increased risk of chest infections. And thus fall into a group of people at increased risk of serious consequences if they do contract the virus. This only underlines the need for us to support them at home. To provide that vital lifeline. To help them avoid COVID-19, to reduce social isolation, to reduce the trauma of the current situation, to manage both physical and mental health.
I spoke to a colleague who reported that she was going through her list of clients and traffic lighting them in terms of risk. She told me that some of her clients usually had carers three times daily, but these were being reduced to once daily. So she was planning regular telephone calls to keep in touch with these individuals to try to keep an eye on them and flag them up before they just ended up being admitted and contracting COVID-19 anyway.
Other organisations including the Royal College of Speech and Language Therapy have developed accessible information about COVID-19 to support people who are trying to explain this to their loved ones.
Support groups (including the UCL Rare Dementia Support), third sector organisations (including Dyscover) and charities are offering activities online (The Include choir are running online choirs). Many other individuals and organisations are reaching out to try to provide support- such as virtual conversation groups. But often people do not know about these supports unless we tell them about them. So it remains important that we point people towards these valuable tools!
Problem solving is also a key component of our role. Suggesting how to maintain a routine, developing accessible timetables, suggesting non-language based activities to engage people at home such as dominoes, drawing, listening to music, gardening, sorting out kitchen cupboards.
Equipping some individuals with wallet cards and contact information explaining their diagnosis could help keep them safe if they are still continuing to go out and about.
COVID isn’t only about the people in hospitals, it is also about those vulnerable outside of hospital. SLT still have a role in keeping them safe and preventing them from becoming inpatients with COVID.