The best way to support people with dementia while they are living in the community is to support their carers, a conference has heard.
Dr Meredith Gresham, who heads the UNSW-based COGNISANCE international dementia consortium, said 459,000 people in Australia are living with dementia, most of them in the community.
Some 1.6 million Australians are supporting someone with dementia, about half a million of whom are family carers.
“If our family carers were to down tools today and walk off the job health, aged care, community care and the Australian economy would not cope,” she told the International Dementia Conference 2020 which was held online this week.
Understanding models of care
Dr Gresham outlined two styles of carer, saying it is crucial to understand how carers tick if we want to ensure they are engaging with appropriate services and support.
The ‘care provider’ tends to see a person’s needs and meet them themselves. The ‘care manager’, on the other hand, asks who the best person or service to meet a need is, and tends to delegate.
“Understanding carer style provides important information about how carers interact with formal and informal supports,” Dr Gresham said on Tuesday.
“It explains why some readily use services and support, including respite, and why some don’t.”
Carer training can also help people understand how and when to engage with and use services regardless of where they sit on the carer model spectrum.
Carer education programs
Dr Gresham has been involved in delivering education programs involving both the carer and the person with dementia for more than 30 years.
One of these was a 10-day in-patient carer training program held for 90 couples at Sydney’s Prince Henry Hospital in the 1980s.
The trial found that 65 per cent of the people with dementia who did the program remained at home after 12 months, compared to 26 per cent without the training.
In 2012 the research was repeated at a HammondCare dementia facility. The Going to Stay at Home Program showed that over 12 months carer depression and burden didn’t increase, despite a decrease in the function of the person with dementia.
It also found a reduction in behavioural and psychological symptoms in the person with dementia, and 12 months later the rate of admission to permanent care was only 17.6 per cent for those who did the training compared 52.9 per cent for those who only used respite.
Modeling by Flinders Uni estimated the costs of such a residential program would be recouped by health and social care services within just five months, Dr Gresham said.
Burden versus strain
It’s also important to understand the concept of ‘carer strain’ Dr Gresham says, because research has shown this can influence the behaviour of the person with dementia and increase the likelihood of them being institutionalised.
While ‘burden of care’ relates to the amount of care undertaken by a carer, this is distinct from care-related strain.
“Strain experienced by carers is subjective and is only loosely correlated with objective measures of burden,” Dr Gresham said.
“For some carers small amounts of dependency or very minor changed behaviours may be experienced as crushing strain.”
Isolation, guilt, lack of support and a feeling of being ‘trapped’ increases stress; while support, education and confidence in the job being done decreases it.
“If we can offer interventions that reduce the factors that make things worse for carers and boost protective factors, what we will do is … reduce strain, burden and difficult changed behaviours,” Dr Gresham said.
Despite this, policy tends to target one or the other person, rather than treating them as unit.
“Some of the best support we can give people with dementia is actually support for carers,” she said.
“Carers are utterly critical and as numbers of people with dementia rise carers will become a more critical part of the services and support systems for people with dementia.
“Unfortunately, I don’t think that we are doing as well as we could.”