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Going to stay at home

The experience of caring for a family member living with dementia at home can as rewarding as it can be difficult, challenging and even exhausting.

Research has shown the extent to which carers suffer from depression and have difficulty in meeting their own health care and personal needs.

This was clearly demonstrated in the mid-1980s, through a research project started at Sydney’s Prince Henry Hospital led by international expert professor Henry Brodaty.

This research trialled an intensive training program for carers, where both carer and the person living with dementia, went to stay at the hospital. The carer received training while the person living with dementia enjoyed a stimulating respite program.

The whole group would meet up again for social activities and meals. This was a randomised controlled trial where 96 ‘couples’ were either allocated into a training group, waited six months for training, or only received respite care.

Following up carers a year later, those who had received training showed significantly less stress and better general health than those carers who had not received the training.

When the project results were further evaluated three, five and eight years later, the researchers found that those people living with dementia whose carers received the training lived longer and remained at home longer before they needed to enter a residential facility.

An economic evaluation at three years found savings to the overall health and aged care budget of an average of $8000 per couple (1991 figures).

Meredith Gresham, the senior dementia consultant (research and design) at the Dementia Centre, coordinated the original project alongside Professor Brodaty.

Her belief is that “the training not only transformed lives of carers, it improved the lives of those living with dementia”.

The program formed the basis of many other carer education programs but was not revived as a residential program until recently.

“Being residential takes away the stress of just getting to carer support and education.

Meals and day-to-day household chores are taken care of which allows the carers to focus on themselves for a week. It’s like a holiday with the added benefit of support from people who have experience of caring for someone with dementia,” Gresham said.

This year, HammondCare has received funding from the federal Department of Health and Ageing, as part of the Aged Care Services Improvement and Healthy Ageing Flexible Fund.

This will in part be used to offer an updated residential intensive carer training program at its new facility in Sydney’s Miranda. The program is based on the Prince Henry Hospital research.

The program, Going to Stay at Home, is designed so the carer and the person they care for learn skills, develop a support network and then return home with the tools they need to remain there, safely and happily, for longer.

Gresham, who is part of the team coordinating the new project, said that they are looking forward to extending the benefits of the research from the 1980s.

Professor Brodaty and the team at the Dementia Collaborative Research Centre at the University of New South Wales will evaluate the program.

Psychology graduate Julie Paterson, who is part of the program, said that referrals are being sought from community aged care services and other health professionals.

The week-long, live-in training is for people with a diagnosis of dementia, who live at home and have a primary carer who may be a spouse, adult child, sibling or friend. Double or single accommodation with en-suite is available in a brand new 8-bedroom cottage.

“The program will be particularly good for those people who live a long way from dementia support groups or who have more recently received a diagnosis of dementia,” Paterson said.

“It is available for only 100 couples and is running between March and October 2013 in weekly groups of six couples.”

The course will include:

  • Helpful strategies – including stress management; dealing with emotional impacts (stress, anger, grief, guilt) looking after yourself; communication; problem solving.
  • Understanding dementia.
  • Planning for the future: legal, medical and financial.
  • Developing effective personal, family, community and professional support networks.

Rebecca Forbes is the project officer at The Dementia Centre, HammondCare.

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