Dr Jacqueline Wesson
Senior Lecturer, Discipline of Occupational Therapy, University of Sydney
‘Boredom for people living with dementia is like being confronted by stairs for a person using wheeled mobility.’
The dementia advocate with lived experience who shared this analogy highlighted the exclusion and frustration that can be part of everyday life for people living with dementia. For people living in residential aged care, this experience is not uncommon.
Participation is essential, but how do we know how to choose from so many activities?
We know that participation in everyday activities is an essential part of life for everyone, reinforcing a sense of self and self-efficacy, maintaining skills, and providing enjoyment. However, being able to understand a range of things someone might like to do within the constraints of institutional living, and with participation restrictions caused by dementia, it can be very hard for care staff to know how to determine what are the best activities to offer. Aged care providers might have locally developed protocols that may be based on embedded assessments in their client software systems, and/or may have staff specifically trained to assess residents for activities therapy. However, there is no single assessment that has been standardised and validated in Australia for people living with dementia in residential aged care that will help guide a conversation through what is meaningful for the person themselves.
A new tool to assess leisure and enjoyable activities
Researchers at the University of Sydney (Dr Wesson) and the Australian Catholic University (Dr Helen Badge and Professor Elspeth Froude) are collaborating with a number of aged care providers to investigate an assessment tool that will help provide rich information about residents’ past, preferred and current activity engagement. We have come up with the LEAP tool – Leisure and Enjoyable Activities Profile that is essentially a revised, Australian version of an American measure called the Pleasant Events Schedule (PES).
Working with final year occupational therapy honours students at the Australian Catholic University, the project started with interviews with residents with dementia or memory loss, and the staff who cared for them. The content of the original tool was assessed against internationally accepted standards (COSMIN criteria),  essentially to see if it made sense to residents and staff, if it covered enough ground or scope, and if everything included was relevant to them. These in-depth interviews revealed that the older PES was inadequate. Changes were made, based on these findings and the tool was renamed the LEAP.
Next steps to make the LEAP free for everyone to use
We are now testing the LEAP in selected residential care settings to explore whether the tool is reliable and valid for settings outside those where it was developed. Once this data is collected and analysed, we will have the LEAP ready for wider publication. Evidence from the literature tells us that ‘meaningful activity’ should be enjoyable, suited to peoples’ skills, abilities, and preferences, engaging and individualised. Using the LEAP means that we will be able to establish what is meaningful to people living with dementia in residential care as individuals. And next steps? Provide the activities of choice in ways that will work for them, to continue participating and living the best life.
*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.
Jacki is an occupational therapy early career researcher at the University of Sydney. She has a clinical background in the public health sector, working predominantly in older people’s mental health, including a memory clinic. She has worked at clinical and state-wide policy roles, and more recently worked in residential aged care as a dementia consultant, supporting people living with dementia with behaviour support needs.
Jacki’s research encompasses functional cognition, examining screening tools in older adults with memory loss or dementia, as well as behaviour support for people living with dementia in residential aged care. More information can be found her work can be found here: https://www.sydney.edu.au/medicine-health/about/our-people/academic-staff/jacqueline-wesson.html