Dr Deborah Brooks¹, Dr Deepa Sriram¹, Rachel Brimelow¹, Dr Claire Burley², and A/Prof Nadeeka Dissanayaka¹

1. Dementia & Neuro Mental Health Research Unit, The University of Queensland Centre for Clinical Research; 2. Centre for Health Brain Ageing, University of New South Wales.

Mental health practices for people living with dementia in residential aged care (RAC) are often poor, with an increased risk of prescribing medication for those who experience psychological symptoms and changed behaviours such as agitation. Additionally, psychological, social, and person-centred care can be poorly implemented. The COVID-19 pandemic exacerbated existing concerns about the mental health of residents. However, there is currently no measure to monitor and promote mental health for people living with dementia in RAC.

We aim to co-design a Mental Health Tool for Residential Aged Care (MHICare Tool) that can be rolled out across RAC facilities in Australia to improve mental health practices and outcomes for residents with dementia.

Our study aims to improve current practice and mental health outcomes for people living with dementia in RAC by co-designing a performance measurement tool for use in care facilities. We will ask residents both with and without a diagnosis of dementia, family/care partners and RAC staff, about the key areas that need to be measured and addressed to improve mental health care practice and outcomes. We will also seek to gain the consensus of the aged care industry, consumer organisations, academics, and clinicians on the developed indicators of identified key areas to be included in the tool.

Would you like to take part in this study?

We are currently seeking interest from RAC facilities and individuals who wish to participate in any stage of the development of MHICare. Participation in MHICare gives aged care organisations and staff power to shape a future performance management framework that may assist in strategic management, quality of reporting and provide evidence of continuing improvement.

You can participate in a number of ways:

• Take part in or aid the facilitation of focus groups and/or interviews that will take place at aged care homes (either in person or online). Participants in focus groups and/or interviews will be i) residents, ii) family members/care partners and iii) aged care staff.
• Provide aged care staff and health professionals working within your organisation the opportunity to participate in an electronic survey to provide expert opinion on what should be included in the MHICare tool.
• Trial the MHICare Tool upon completion.
• Participate in software development for automatically generated quality reports and piloting of the digital tool (at a later stage of the project - further funding will be sought for this stage of development).

This initial study has been funded by a project grant from the Dementia Australia Research Foundation. Please contact us for more information (MHICare@uq.edu.au) or go to https://clinical-research.centre.uq.edu.au/MHICare.

*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.

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), [1] 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.

Author information

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