PC News - May 2019
Assessing what works (or not) to achieve outcomes for government services
The first ‘What Works’ review examined the effectiveness of government services aimed at supporting carers of people living with dementia.
Why this review? Caring for people with dementia
Australia’s population is ageing, and as it does the prevalence of dementia will increase. Around 425 400 Australians are currently living with dementia, and this is projected to increase to over a million by 2056. People with dementia are more likely to be placed in residential aged care than those without dementia. More than half of those in permanent residential aged care (about 90 000 people in 2015-17) have dementia, and are more likely to require high levels of care than people without dementia.
Preventing or delaying the entry of people with dementia into residential aged care could be beneficial because:
- it is consistent with the preferences of many older Australians to ‘age in place’ at home
- it would reduce Australian governments’ aged care costs into the future – residential aged care is more costly than home care, accounting for approximately 70 per cent, or $12.1 billion, of governments’ aged care expenditure.
The majority of people with dementia live in the community where they rely on informal carers (usually a family member) to support them. If older people with dementia are to stay in the community for longer, the role of carers is crucial. Interventions that aim to support carers by helping them manage stress, cope with problem behaviours, link them with support services, and increase their feelings of self efficacy, may be effective in delaying or preventing a person with dementia entering residential aged care.
The Australian Government funds numerous programs that support people living with dementia as well as their carers. While government objectives in supporting carers of people with dementia are multifaceted, enabling dementia sufferers to stay in the community for longer is one of them.
The ‘What Works’ review aims to identify what interventions to support carers of older people with dementia are effective in preventing or delaying entry into residential aged care.
Australian governments spend around $220 billion a year on a wide range of services, including health, education, justice and housing. The Report on Government Services (RoGS), produced annually by the Productivity Commission for the Steering Committee for the Review of Government Services Provision, contains comparative information on how jurisdictions are performing in delivering these services, in terms of achieving equity, effectiveness and efficiency outcomes. However, the RoGS does not identify which services actually work, and why. The What Works reviews are intended to complement the RoGS by reporting on this, where possible. The aim of the reviews is to assess current Australian and overseas evidence on whether government services achieve their desired objectives.
The first of the ‘What Works’ reviews – an assessment of interventions to support carers of older people with dementia – was released in October 2018. A second ‘What Works’ review – investigating what is known about systems that enable the public health approach to protecting children – is planned for release in 2019.
Do interventions to support carers of people with dementia work?
The evidence base
The review identified 44 randomised controlled trials (RCTs)1 of interventions from 48 research studies (figure 1). Most of these studies (80 per cent) were published after 2000.
Very few studies had been conducted in Australia. There were only two, one of which was conducted in the late 1980s. The majority of studies were from the United States or Europe.
The interventions were grouped into four broad categories:
- case management – involving identifying the needs of the person with dementia and their carer, and planning and co-ordinating the care required, including the purchasing of services
- education and skills building – involving building carers’ knowledge about dementia and available resources, and helping them to develop skills to address identified problems, such as managing difficult behaviours
- counselling – involving emotion-orientated or education-based counselling, including individual, family and group therapy
- respite care – involving temporary care services (day or overnight) provided to the person with dementia to provide a break for the carer.
Despite variation across interventions, there were some key common features:
- the majority were of 12 months or less duration
- most started with an initial short period of intense contact that decreased over time
- all but one were delivered by skilled people such as nurses and occupational therapists
- over half the studies had less than 200 participants.
Of the 48 studies, 28 (covering 26 interventions) were assessed as high quality. The review primarily focused on these studies.
Figure 1: Collecting the evidence – identifying relevant studies
1 The Medline, Ageline and psycINFO databases were searched.
Are the interventions effective – what does the evidence show?
Interventions that support carers of older people with dementia show limited effectiveness in achieving the outcome of preventing or delaying entry into residential care. Of the 26 high-quality interventions, nine were found to have a positive effect on this outcome, with only three having a positive effect that was also statistically significant.
Of the three effective interventions, none are considered appropriate for adoption at this stage. One was conducted in a context that is substantively different to Australia, so the results are unlikely to be transferable. The other two interventions were very similar, with one an adaptation of the other. However, other adaptations of this intervention were not effective and therefore the overall evidence for the effectiveness of this approach is inconclusive.
Implications for service delivery
The limited evidence of these interventions in preventing or delaying entry to residential aged care has several implications. It suggests that other options aimed at preventing or delaying entry into residential aged care for older people with dementia should be explored (or continued). Interventions that seek to reduce the risk and delay the progression of dementia, as well as research to improve prevention and find effective treatments and cures, for example, may be more fruitful avenues.
While the evidence of effectiveness is limited, interventions should be considered more broadly. First, this review uses a high threshold (95 per cent confidence level) that provides a substantial degree of certainty regarding whether or not interventions prevented or delayed residential care placement. If policy makers are willing to accept a lower level of certainty then additional interventions might be considered (especially if the effect sizes are large). Second, in assessing the merits of any intervention, costs should be considered (costs of interventions were not included in the review).
The finding of limited effectiveness of carer support interventions does not suggest that dementia related funding for carer services, resources and research should be reduced. There are gaps in the research, and – perhaps more significantly – supporting carers of people with dementia may have important benefits beyond keeping the person with dementia at home.
Footnotes
- The review’s scope was restricted to RCTs, as they are more likely than non-randomised studies to measure the effectiveness of the intervention accurately and, therefore, are considered to provide a higher quality of evidence. Return to Footnote 1 in the text
Interventions to Support Carers of People with Dementia
- SCRGSP (Steering Committee for the Review of Government Service Provision)
- Read the Report released October 2018
- More information on What Works reviews is available on the Commission website