Dementia and Coronavirus: Caring for loved ones with dementia during the COVID-19 pandemic
Livewell best-practice preventative measures provide a useful guideline for anyone caring for the elderly and those living with dementia.
Around the world, people are adjusting to a new way of living — social distancing and stringent hygiene measures — in efforts to slow down the spread of COVID-19 infections. Schools are closing and offices shifting to remote work wherever possible or shutting doors for all but essential services, during the 21-day lockdown.
Some of the most vulnerable, however, may not even know they are under threat. The estimated 50 million people living with dementia worldwide, as well as the elderly in care homes, are considered especially at risk. It’s this challenge that care providers must tackle with both calm and resilience.
Jonathan Shutte is the Village Manager, at Livewell, a specialised dementia care facility with estates in Johannesburg & Cape Town, South Africa. With approximately 76 dementia patients in their full-time care, Shutte takes their duty of care extremely seriously. “The mortality rate is 20.9% for people 80 years and older. That’s incredibly high, and most of our residents are older than 80,” he says.
Their best-practice preventative measures provide a useful guideline for anyone caring for the elderly and those affected by dementia.
Understanding the threat
As the World Health Organisation (WHO) explains: “Dementia is an umbrella term for several diseases affecting memory, other cognitive abilities and behaviour that interfere significantly with a person’s ability to maintain their activities of daily living. Although age is the strongest known risk factor for dementia, it is not a normal part of ageing.”
The Alzheimer’s Association is clear that having dementia in itself does not increase the risk of getting COVID-19, but dementia-related behaviours, increased age, and common health conditions that often accompany dementia may increase risk.
There are already a number of examples of how quick and devastating COVID-19 can be in these communities. In Madrid, Spain, the BBC reports that an inquiry is to be launched into the deaths of at least 17 residents of a nursing home that had, at the time of writing, dozens of confirmed cases.
Shutte says that, as a healthcare facility, they were already practicing good hygiene and had rigorous policies in place around handwashing, managing medical waste, and so on. He adds: “We have had to reiterate the policies, and train staff further on COVID-19 specific actions we are taking.” These measures, he says, are aggressive and “rightly so”.
“They are intended for Coronavirus stricken areas and it is a matter of being proactive.”
Keep it simple and kind
It can be trying to change the routine of someone living with dementia. Depending on the patient and their circumstances, you can explain to a lesser or greater extent what is going on and why. Keep explanations short and simple. Don’t overwhelm the dementia sufferer with too much information. If there is aggression or confusion, it is often best to redirect a patient rather than argue or reason with them. Keep old family photos handy, or play calming classical music to try redirect the focus.
Prevention is the best defence
Livewell and Shutte are following the guidelines released by the (American) Centres for Disease Control and Prevention (CDC) specifically for nursing homes and long-term care facilities, which also provide an excellent blueprint for preventative measures taken at home if you care for a person with dementia.
Here are five top takeaways you can implement at home, and some actionable tips for carers.
- Wash up: The number one prevention measure is washing your hands (carers and patients) regularly, with soap for at least 20 seconds.
Take Action: If your loved one is still somewhat independent, you can remind them to do this with signs over the sinks and verbal reminders. Use big clear fonts and pictures. If not, you’ll have to take on this step yourself. Liquid soap and soap bars are fine. Hand sanitiser, if used, needs to be at least 60% alcohol, which many are not.
2. Restrict visitors: This is regrettable but necessary. At Livewell, they have taken the tough call of banning all non-essential visits (with the exception of doctors and physios). “It is a very challenging rule to implement. Many of our residents have visitors on a daily basis. But our residents are the most vulnerable.”
Take Action: If the dementia patient under your care has regular medical and social appointments, call those individuals to discuss what and why you are suspending. Be proactive. You can use video and voice calling to keep providing the love and social interaction a patient needs and wants.
In addition to the above, Shutte says they have suspended all outings. These two measures are aimed at “social distancing” as recommended by health authorities and government. If your patient is still physically able, getting some fresh air in the garden is not a problem. Under the lockdown order, SA residents have been asked to refrain from exercising outside of their homes, so walks will have to be suspended. If you have private outdoor space, use it. If not, think about how to introduce the calming aspects of outdoors indoors: move pot plants into a shared space, open windows for plenty of fresh air. With much industrial and commercial activity shutting down, you will likely be able to hear bird calls, even in the heart of the city. Sit with the patient and encourage active listening.
3. Isolation steps: Livewell residents are all in single rooms, and often eat one person per table anyway. They’re continuing like this, and plan that if anyone does contract COVID-19, they can be isolated in their own room.
Take action: For isolation steps outside of the patient’s home, call their primary physician and local pharmacy to tell them about your decision to self-isolate. Ask if your pharmacy delivers medication or if scripts can be written for weeks in advance to limit the amount of time spent in public. Grocery stores and pharmacies are exempt from the lockdown and many are offering delivery services. Ask them to leave the package on your doorstep and take several steps back before you open to fetch the parcel. Most are already well-versed in the changes to normal delivery protocol. Wipe down outside packages when you bring them into your home. The virus can survive several hours on surfaces.
4. Careful carers: Whether you care for a dementia patient on your own, or have help, these people become the biggest risk. At Livewell, they screen every staff member as they walk in. “This is a symptomatic screen,” he says, “that checks for five major symptoms (cough, fever, shortness of breath, runny nose, and sore throat). Any symptomatic staff member is not allowed on the premises. They don’t even enter the building.”
Take Action: At home, this might seem extreme, but it is your best bet. This is especially true for kids, as children with COVID-19 are often asymptomatic despite being infected. Most people have offered domestic staff and related services paid time off. This does create extra care burden but is a necessary step to flattening the infection curve.
5. Take care: Finally, Shutte says, they know that these measures are not easy to implement. Changes in routine are especially difficult for dementia patients, and there is already an emotional burden on carers. Try to bear in mind that they often have no idea they’ve asked the same question previously, multiple times. Keep responses neutral and kind.
Take action: “You know your loved one, and you learn to work with them, with their specific needs and challenges. Seek support where you can, especially within the dementia care community who know first-hand what you are experiencing.” Carve out small moments for personal quiet time. Even a short break can do wonders, and know that this will end and we are all in it together — from a safe social distance.
For information regarding COVID-19, add the National Department of Health chat number to your whatsapp, so you can seek help and information from a trusted source (+27600123456). There is also a 24-hour hotline number — 0800 029 999.
For dementia-related support, join the free, private Livewell Facebook group. Search for Livewell Villages on Facebook and select ‘Groups’ https://www.facebook.com/groups/livewellvillages/
