People living with dementia add voice to care model debate

Coinciding with Dementia Awareness Month, a new Flinders University study has asked Australian aged-care residents to rate the quality of care they receive.

Out of a range of different long-term aged care accommodation models, participants in the study – the majority of which had a diagnosis of dementia – rated the overall quality of care as higher in home-like (clustered) models of care.

This more home-like model of care provided residents with greater flexibility and choice in their care routines, compared to the standard residential aged care model.

“It is important that we know the view of the residents and their families about the quality of care, says co-author Dr Suzanne Dyer, a senior research fellow at Flinders University.

The participants in our study rated the flexibility of care routines and being able to access the outdoors whenever they wanted as higher in a clustered, domestic model of care compared to those in more standard aged care homes.”

The introduction of consumer directed care has meant understanding quality of care in the residential aged care setting from the consumer perspective is critical.

Previously, measures of the quality of aged care have largely focused on a regulatory perspective based on clinical outcomes or processes of care from the perspectives of staff or independent assessors.

Published in the International Journal of Quality in Health Care, the study titled Clustered domestic model of residential care is associated with better consumer rated quality of care, by ES Gnanamanickam, SM Dyer, R Milte, E Liu, J Ratcliffe and M Crotty, was led by Flinders University’s Rehabilitation, Aged and Extended Care research group.

Researchers used a simple questionnaire they developed and validated called the Consumer Choice Index- 6 Dimension (CCI-6D), to enable assessment of the quality of care from the perspective of residents or their family members.

The questionnaire compared care services in standard residential aged care facilities with more home-like, domestic models of care and measured care time, how home-like shared spaces and their own-rooms are, outside and gardens, meaningful activities and care flexibility.

While the amount of the care time provided was rated as similar between the types of care homes, the residents and family members rated being able to get outside whenever they wanted and the flexibility of the care routines as better in the clustered domestic models of care.

Kathy Williams (interviewed in the above video), who cared for her mother with dementia and is involved in the study, is not surprised that residents and families felt the homelike models provided a better quality of care.

“In a small home-like environment people are living with fewer people, they have an opportunity to access outdoor spaces on their own,” she says.

“They also have an opportunity to be involved in meal preparation and other activities, like they would in their own home.”

The results of this study are part of the larger, the Investigating Services Provided in the Residential care Environment for Dementia in Australia (INSPIRED) study, funded through the NHMRC Cognitive Decline Partnership Centre.

In the INSPIRED study, the home-like model of care is a home with small clustered houses in which residents have more flexibility in their care and activities.

Residential aged care homes identified as having a home-like model of care had at least five criteria – small size (up to 15 residents living in a unit); accessible outdoor areas which residents can use independently; consistent care staff allocated to each unit; meals cooked within the units; meals provided in a self-service style; and residents able to assist with meal preparation.

Residents and their family members rated the overall quality of care as better in a home-like model compared to the standard model, citing access to outside and gardens and flexibility of care leading to better quality of life, a lower rate of being admitted to hospital, lower chances of an emergency department presentation and less likelihood of being prescribed a potentially inappropriate medication.

Another survey by the Flinders research group covered 1,001 people (“A Population Survey: What Does the Australian General Public Know About Treatments for Dementia?” published online in Gerontology and Geriatric Medicine). It found more than half (63.5%) could not spontaneously name any treatments to improve outcomes for people living with dementia.

When asked about the efficacy of specific treatments, “brain training” was considered to be “very likely” to be effective by about half (49.4%), followed by “education for caregivers” (46.2%) and “healthy diet” (43.4%).  Less than one-third of participants identified that they had a family member who has or has had dementia.

This survey comes in the wake of recently published research that shows the general public still tends to believe dementia is a normal and non-preventable part of ageing, despite decades of public awareness campaigns about the potential for dementia prevention.

“The public should be made aware of how they can access these programs, how the programs can help them reach their care needs or goals, the estimated costs involved, and the effects of accessing such programs. Thus, there is a need to understand what the public knows about dementia, including signs and symptoms, risk reduction, and treatment,” Ms Rahja says.

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College of Medicine and Public Health Research