It’s hard being in lockdown. Having endured multiple of them since March 2020, it’s something pretty much everyone can agree on. Being separated from family and friends, being restricted in our movement and experiencing complete isolation can prompt a wide range of emotions and physical reactions. For people living with dementia and their caregivers, lockdown is even harder.
There’s no doubt that the COVID-19 pandemic was catastrophic for Long-Term Care Homes (LTCH). Between March 1, 2020 and February 15, 2021, more than 2,500 care homes in Canada experienced a COVID-19 outbreak resulting in the deaths of over 14,000 residents and close to 30 staff, according to The Dementia Strategy for Canada 2021 Annual Report. The majority of those LTCH residents are living with dementia. This brutal reality, especially in the early days of the pandemic, underscored the need for some type of tool to help LTCH residents and staff.
Dr. Andrea Iaboni, a geriatric psychiatrist and clinical researcher based at the Toronto Rehabilitation Institute at UHN and the Medical Lead of the Specialized Dementia Unit, quickly put a plan into action to develop a Dementia Isolation Toolkit (DIT). She and a diverse team of both KITE resources and external partners got to work quickly on the first DIT as the pandemic was declared.
Within six weeks they had designed, built and launched DIT version 1.0. Since then, the DIT has been downloaded 9,000 times. When asked how they did it, Dr. Iaboni says, “the structure and support at KITE gives us the confidence to launch and ask people to use it.”
The DIT’s overall purpose is to provide ethical guidance on how to safely and effectively isolate people living with dementia in LTCH while supporting their personhood.
The DIT has two specific goals.
The first goal is to support the implementation of compassionate and effective infection control and prevention measures in LTCH, such as isolation and quarantine of LTCH residents.
The second goal is to help caregivers with any moral distress they feel by having to enforce isolation and quarantine of residents. Keeping residents in their rooms is necessary for the good of the whole LTCH, but is also in conflict with person-centred care principles used to guide LTCH settings. This ethical conflict can cause moral distress.
The DIT is a set of three tools: Ethical Decision-making, Person-Centred Isolation Care-Planning, and Isolation Communication tools. The tools can be used together or separately, and each tool can be downloaded from the website dementiaisolationtoolkit.com. Collectively, these three tools achieve the DIT’s purpose and goals.
The Ethical Decision-making tool sets out the principles of public health ethics in the context of LTCH and provides a structured approach for LTCH staff to discuss and apply these principles. The tool is a worksheet that facilitates discussion and documentation on how to isolate a resident for infection control and prevention. It covers the strategies to be considered, risks and benefits of these strategies, and the chosen plan of action. It includes input from many stakeholders, including the resident and the resident’s family.
The Person-Centred Isolation Care-Planning tool has been the most popular tool so far. This tool is also a worksheet that helps the LTCH staff identify and communicate practical steps that can be taken to support the resident in isolation. It prompts discussion on questions such as: why the person leaves their room and what brings them back, what they like to talk about, what kinds of reminders work for them and whether they understand why they need to stay in their room and can’t visit others?
The Isolation Communication tool. This tool has 13 signs that are reminders for people living with dementia to stay in their room, stay back from others, wear a mask and wash their hands.
In January 2022, Dr. Iaboni published DIT version 1.0 survey results.
Of survey respondents that used the toolkit:
These results show that there is a role for DIT to support people with dementia and their caregivers.
Dr. Iaboni identifies many success factors that came together quickly for this project. She says DIT is reflective of KITE’s “fundamental practice to rapidly move research into development and launch, then evaluate and improve, and re-launch.” DIT is proof that this practice yields positive and meaningful real-world results.
This project truly embodies KITE’s acronym: Knowledge, Innovation, Talent, Everywhere.
The knowledge and talent brought to bear were instrumental in creating the DIT. An integrated and collaborative team of research and clinical experts from UHN and external partners came together. This team included ethicists, researchers in person-centred care and relational care for people with dementia, experts in health systems and the LTCH setting, an epidemiologist, an expert in dementia technology and communication, implementation scientists, clinicians and even a graphic design student. From the start, they also had support from provincial organizations such as Behavioural Support Ontario, Ontario Centres for Learning, Research and Innovation, and the Regional Geriatric Program.
The innovation mindset at KITE was a driving factor. Identifying the need for DIT and then translating it into actual clinical practice by designing, building, and launching it in six weeks, shows the innovative spirit at work as well as the passion and commitment of the team to drive the project forward.
And finally, the DIT has applicability everywhere beyond its initial focus for LTCH. So far, Dr. Iaboni says the toolkit has been implemented in LTCH, acute care, developmental care and psychiatric settings, and in the community. It’s a scalable solution, and has been accessed by people across Canada, in the U.S., U.K., Australia and New Zealand.
Dr. Iaboni and her team have their work cut out for them. Two evaluation studies are currently in progress. First, the team has a research paper currently under peer review which does a deeper dive on moral distress. Second, they’re doing an implementation study at three Ontario LTCH to look at barriers to applying the DIT and find ways around them. This study will inform future research on how to support person-centred care in LTCH.
And, DIT version 2.0 is also in progress. It will reflect where we are now in the pandemic, as vaccinations have significantly reduced the risks in LTCH but those risks remain. It will also reflect feedback from users to be shorter and more geared for use in their huddle settings.
DIT version 2.0 will also be translated into more languages than version 1.0. Short training videos are already available in seven languages.
The pandemic has heightened our awareness and understanding of the barriers to using isolation as an infection control and prevention measure in LTCH. Isolation can be harmful to people living with dementia and cause moral distress in caregivers.
In June 2019, Canada announced a Dementia Strategy with a vision for “a Canada in which all people living with dementia and caregivers are valued and supported, quality of life is optimized, and dementia is prevented, well understood, and effectively treated.”
The DIT may have been a reaction to the unprecedented challenges of COVID-19, but it also directly supports Dementia Strategy vision. In fact, the DIT is featured in The Dementia Strategy for Canada 2021 Annual Report. It’s noted as one of the highlights of Canada’s dementia-related research responses to the COVID-19 pandemic.
And while we all hope to never see another pandemic in our lifetime, it’s good to know that the DIT has broken ground on a vastly helpful resource for people living with dementia and their caregivers in future infectious disease outbreaks.
KITEworks Magazine is an annual collaborative project between Centennial College's Professional Writing-Communications and Photography programs and KITE. The stories, experiences and photographs shared in this year's edition of the magazine give an unfiltered look into how KITE has evolved to become a world leader in rehabilitation science. Come and explore how KITE works!