Topic: Measuring quality of life for people living with dementia
Day: Thursday 22 October 2020
Time: 1:50pm-2:10pm AEDT
The purpose of this presentation is to describe quality of life measures for people living with dementia trialed and developed by Benetas.
Quality of life (QoL) is a key outcome in aged care. It is recognised within the Aged Care Quality Standards and was recently identified as a key indicator of quality in a Royal Commission into Aged Care Quality and Safety Research Paper. In practice, measuring QoL in aged care is challenging, and no more so than when clients or residents are living with dementia. Many standard QoL tools are not suitable for people with cognitive impairment, but this group accounts for a significant proportion of aged care residents and clients. We need ways to measure QoL that are applicable, robust, and feasible.
We undertook a pilot study to develop an approach for measuring QoL for people with a cognitive impairment. The project was supported by an Advisory Group comprised of practitioners, an external expert in dementia, and people with lived experience.
Based on a desktop review, we selected a small number of existing tools to trial, including the DEMQOL (Dementia Quality of Life) and DEMQOL-Proxy, and the WHOQOL-100 (World Health Organization Quality of Life). During the course of the project we also developed and piloted our own brief QoL tool for people with severe dementia. We also explored the feasibility of the tools with staff in residential and home care settings.
Participants were a purposive sample of residents (n=24) and home care clients (n=7) with a range of dementia diagnoses, and family carers (n=4). We found that the DEMQOL was suitable to measure QoL for people with mild to moderate dementia. However, people with severe dementia could not complete the DEMQOL themselves. Case studies illustrate how people with severe dementia completed the simple tool we developed, and the value of this. The WHOQOL was useful with family carers in home care. Staff reported that the tools were easy to use and gave them new and useful information about residents and clients.
Our results show that QOL tools can be used in a feasible and meaningful way to measure the quality of life for aged care residents and clients. This can support aged care providers to demonstrate how they are meeting their goal of improving the quality of life for people who use their services.
Dr Catherine Joyce is General Manager, Quality, Outcomes and Research at Benetas. In this role she supports Benetas to deliver evidence-informed, person-centred, best practice care and services. While Catherine has worked as a university academic for much of her career, she has had a consistent focus on linking research with policy and practice. She has worked in the government and not-for profit sectors as well as academia, and has had a particular focus on client and consumer perspectives.
Catherine completed her PhD in health services research at the School of Public Health and Preventive Medicine, Monash University, where she continues to hold a position as Adjunct Associate Professor.