Interventions to Support Carers of People with Dementia

• Australia’s population is ageing, and as it does the prevalence of dementia will increase. By 2056 over a million people are anticipated to be living with dementia.
• Dementia leads to significant disability in later life. Due to its disabling effects, people with dementia are at greater risk of placement in residential care. Over half of those in residential care in Australia have dementia.
• Most Australians prefer to age in place rather than in residential care and supporting them at home could also reduce governments’ aged care costs.
• The role of carers is crucial if older people with dementia are to stay at home, but caring for a person with dementia at home can be demanding. Governments fund a range of supports to assist them in this role. Keeping older people with dementia at home is only one of a range of objectives in providing these supports.
• This review considers what works to support carers of older people with dementia to prevent or delay entry into residential aged care. It identified 44 interventions (most from overseas) that supported carers of people with dementia, of which 26 were from studies assessed as high quality and so were the focus of the analysis.
• 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 interventions in high-quality studies, only three were found to be effective. Two involved counselling and the other involved case management.
• None of the effective interventions are considered appropriate for adoption at this stage for the purpose of preventing or delaying entry into residential aged care. The overall evidence of effectiveness for the counselling interventions was inconclusive as some adaptations were ineffective. But there may be value in further testing. One adaptation had success in the Australian context albeit with important caveats. The case management intervention had several context-specific aspects that limit its transferability to Australia.
• Overall, why some interventions were effective in delaying or preventing entry to residential care and others were not is unclear. The interventions often have multiple components, making it hard to isolate the characteristics that influence residential care placement. In addition, many of the components in effective interventions also existed in those that were not. And context — in relation to place and time — matters.
• Reducing the risk and delaying the progression of dementia may be a more fruitful avenue to prevent or delay entry into residential care than interventions to support carers.
• But the finding of limited effectiveness of interventions to support carers does not suggest that dementia-related funding for carer services, resources and research should be reduced. There are gaps in the research (in particular, studies for respite services). And supporting carers of people with dementia may have important benefits beyond keeping the person with dementia at home.

This review considers what works to support carers of older people with dementia to prevent or delay entry into residential aged care. It adopts a rigorous and systematic approach to identify and appraise the evidence, aiming to inform dementia policy.

Why is this review important?

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.

Dementia is a progressive and irreversible condition leading to significant disability in later life. Due to its disabling effects, people with dementia are more likely than those without it to be placed in residential care. More than half of those in permanent residential care in Australia have dementia.

Preventing or delaying the entry of people with dementia into residential care could be beneficial:

• as it is consistent with the preference of the majority of older Australians to ‘age in place’
• in reducing Australian governments’ aged care costs into the future — residential care accounts for about 70 per cent of these costs.

The role of carers is crucial if older people with dementia are to stay at home for longer. Caring for a person with dementia at home can be demanding, particularly as the condition progresses and care needs increase. The risk that the person they care for will enter residential care can be influenced by their feelings of stress and burden, and ability to cope.

What were the carer support interventions included?

The review identified 44 randomised controlled trials (RCTs) of interventions (from 48 research studies). Most of these studies (80 per cent) were published since 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.

There was considerable variation across the interventions, but they were grouped according to their key components into four broad categories:

• case management — involves 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 — involves building carers’ knowledge about dementia and available resources, and helping them to develop skills to address identified problems, such as managing difficult behaviours
• counselling — involves emotion-orientated or education-based counselling, including individual, family and group therapy
• respite care — involves temporary care services (day or overnight) provided to the person with dementia to provide a break for the carer.

While some interventions were relatively easy to categorise, many were difficult as they were multicomponent and could have been included under multiple categories.

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 at relatively low risk of bias (high quality). The review primarily focused on these studies in order to ensure that the results presented reflected the effectiveness of interventions, and not potential problems with study design and evaluation.

Are carer support interventions effective in delaying or preventing entry into residential care?

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. However, only three had 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.

What are the implications?

The limited evidence of effectiveness of these carer support interventions in preventing or delaying the placement of older people with dementia in residential care has a number of 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 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 using a broader framework. 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 (for example, an 80 per cent confidence level) 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 this 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.

• Reliable evidence for some common carer support services was not available (for example, studies of respite services). Moreover, the methodological and reporting weaknesses of many studies limited the number and range of intervention evidence available for this review. Further, more experimentation may be required to better understand and target the factors leading to residential care placement.
• Caring itself can have a negative impact on carer physical and mental health, especially for those who provide a high intensity of care. Recognising this, governments fund a range of services and resources to support for carers. These services and resources can offset some of the negative effects of caring, improve carer quality of life and perhaps reduce carers’ own health risks.