Caring with compassion for people living with dementia during COVID-19

Categories: Ask an Expert, Sponsored Article|By Andrea Iaboni|Published On: |

The Dementia Isolation Toolkit is an important resource to guide ethical and person-centred care in places like long-term care and hospitals in the midst of a pandemic.

This article was written by a guest contributor, and the views, thoughts, and opinions expressed in this article belong solely to the author.

Illustration by Katia Engell. © DIT project.

Pandemics are fraught with ethical dilemmas. Every decision involves some calculation about the risk of being infected with COVID. Another part of the equation are the harmful effects of the public health measures we are using to prevent COVID such as physical distancing and isolation. How we balance the prevention of COVID with the potential harms of these measures has become a central question of this pandemic. It is the question that the Dementia Isolation Toolkit was designed to help answer. Please visit our webpage, www.dementiaisolationtoolkit.com , to download our tools and learn more about this project.

People with dementia, particularly those in long-term care, have been uniquely impacted by these public health measures. The serious consequences of outbreaks in the long-term care homes have led to public health measures that have had a severe impact on some individual residents living with dementia. These residents have been asked to give up most of their freedom, routines, and important relationships during this pandemic. And we have offered them very little support to minimize the harms of these restrictions.

Illustration by Katia Engell. © DIT project.

Family, friends, and essential caregivers have been placed in an impossible position of being separated from the person that they care for, with few tools at their disposal to advocate for their well-being. Christine Strachan, whose mother died in a long-term care home in July, recalls “she would say to us things like, “What did I do to make you not love me? I would rather die than not have my family.” Sandra Caleta who was prevented from being with her mother at the end of her life had a similar experience: “What haunts me the most to this day, is that she died thinking that we had abandoned her.”

There are no easy answers in this pandemic, but there are ways to make sure we are approaching these situations in a more compassionate way that better considers the needs and interests of residents living with dementia. The Dementia Isolation Toolkit or DIT is a simple primer on public health ethics for people working in long-term care. It is designed to help people work through difficult decisions and to help them find options that they might not have considered. The DIT decision-making worksheet prompts care providers to consider what resources and strategies can be added to minimise the harms of isolation and to use the least restrictive options.

During stressful situations, it can also become easy to forget that residents are people and not problems. The DIT person-centred isolation care planning tool reminds us that effective and compassionate isolation is best achieved by identifying the needs and interests of the individual resident and making a plan to meet them. Families have an important role to play here, in helping the long-term care home to develop a plan to support a resident during isolation.

The pandemic has been hard—and often heartbreaking—in long-term care. But the DIT tries to help us remember that there are always options. Even in those situations that seem impossible, we can still make small choices to help people living in long-term care.