Dementia care tools need improvement
Research reveals gaps in dementia care tools, urging the need for specialised instruments to improve patient experiences.
New research reveals that despite over half of aged care residents living with dementia, existing tools designed to enhance care quality may not adequately meet their needs.
Recent studies from Flinders University’s Caring Futures Institute have exposed significant gaps in current monitoring instruments, prompting calls for the creation of more effective tools tailored specifically for people with dementia.
Associate Professor Rachel Milte from the Caring Futures Institute and Flinders’ College of Nursing and Health Sciences, explains that quality of care measures, including patient-reported experience measures, are vital tools in ensuring the experiences of those in our health and aged care sector are heard and understood, so improvements to care can be made.
“Previously, little was known about the methods and instruments used to capture these perspectives, but now our work has highlighted there is an urgent need for more inclusive and effective instruments in long-term care settings for older people living with dementia, in order to best capture their feedback.”
In one of the studies, the authors conducted a thorough review of existing quality of care instruments used in long-term care facilities. Out of 16 identified instruments, only two were specifically developed for older individuals with dementia, while three were modified to accommodate those with mild to moderate dementia.
The review also found that none of the instruments had undergone complete psychometric testing to ensure their accuracy and effectiveness, and they often failed to incorporate alternative communication methods suitable for those with dementia.
“Many existing instruments rely heavily on text-based formats, which can be challenging for people with cognitive impairments. There is a pressing need for tools that use more accessible communication methods such as images, pictographs, and audio-visual materials,” said Ms Milte.
The second study investigated the use of patient-reported experience measures (PREMs) for populations with diverse communication needs.
Professor Kate Laver from Flinders’ Caring Futures Institute, who authored the study, says there has been growing use of patient-reported experience measures to help evaluate the care experiences of vulnerable populations, including people with cognitive impairment, mental health concerns, and children.
“We wanted to understand what PREMs have been used previously with people with diverse communication needs, and whether they could be adapted and improved for people living with dementia,” she said.
The researchers found similar gaps in the available PREMs for capturing the experiences of dementia patients. Most existing PREMs are not adequately tailored for this group and often overlook the specific aspects of care that are most important to them.
“Current PREMs tend to prioritise organisational and clinical indicators rather than personal experiences, which can lead to an incomplete understanding of care quality from the patient’s perspective,” says Ms Laver.
“For those with moderate to advanced dementia, we need to develop dementia-specific PREMs that prioritise the voice of patients themselves, rather than relying on proxies like family members or healthcare staff who may not fully understand or accurately represent the patient’s needs and preferences.”
As Australia’s population ages and the prevalence of dementia rises, the authors stress the urgency of developing validated tools that reflect the voices and experiences of those living with dementia.
“These tools will be key to understanding and monitoring self-reported healthcare experiences for people with moderate to advanced dementia, ensuring that consumer voices are elevated and platformed to inform quality improvement throughout the sector,” concluded Ms Milte.
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