Pictorial tool for assessing quality of life

To evaluate the effectiveness of aged care interventions, outcome measures such as Health-related Quality of Life (HRQoL) are used. People with dementia self-report their quality of life using HRQoL questionnaires, however the loss of memory and verbal communication in severe dementia hinder their self-reporting. Proxies, such as family members, carers or healthcare professionals rate their quality of life on their behalf, however, reliance on the ratings of proxies provides an inaccurate assessment as there is often a significant difference in QOL ratings between people with dementia and their proxies. This presents a major challenge in involving people living with dementia in making decisions, rating their quality of life (QoL) and providing feedback on the health and aged care services they receive.

This project aims to develop, trial, and evaluate an audio-pictograph tool that will enable the active participation of people with communication, memory, and language problems in rating their quality of life.

Research funded by: NHMRC Boosting Dementia Research Leadership Fellowship

Research objectives

To design a pictographic tool that reliably captures the quality of life of people with dementia or other issues that affect verbal and written communication.
To involve stakeholders in tool design process, including informal carers and dementia consumer representatives, to ensure we develop a tool that is suitable for and understood by people with dementia.
To incorporate the perspectives of people living with dementia and their caregivers in quality of life interventions.

Why is this research important?

This project will enable people with dementia to rate their quality of life without relying solely on the perspective of a proxy
People from culturally and linguistically diverse (CALD) backgrounds may quickly lose the ability to communicate in English, even at mild dementia stage. This research project aims to assist CALD in expressing their thoughts visually.
Giving voice to people with dementia will result in better targeted care for those living with the condition.

Updates

How can you become part of this project?

We believe that diversity and inclusion are fundamental in the creation of user-centred tools. If you want to participate in a focus group or complete a survey, or if you have any suggestions, please contact us using the contact details provided. We would love to hear from you.

Contact

Professor Tracy Comans
(Principal Investigator)
Email: t.comans@uq.edu.au
Phone: +61 7 334 65345

Haroon Khan
(Co-investigator, HDR candidate)
Email: uqmharo1@uq.edu.au