Respite Care Failing Carers And People With Dementia

Embargoed until 5th June 2009

Media Release

Respite Care Failing Carers and People with Dementia

More than a quarter of people who care for someone with dementia need respite care but don't receive it, according to a new report from Alzheimer's Australia.

The report, Respite Care for people living with Dementia: It is more than just a
short break, was released today at the 13th Alzheimer's Australia Conference in
Adelaide.

Glenn Rees, National Executive Director of Alzheimer's Australia, said respite care was accepted as a crucial component of carer support that can assist people with dementia to stay at home for as long as possible.

"The report tells us that many carers are unable to access the kinds of respite they need when they need it, or are reluctant to use the services that are available," Mr Rees said.

"For every three dementia carers who have used respite, there are another two who need it but have not used it.

"But respite care, particularly in the mild to moderate phases of the disease, is vital for the health and wellbeing of both the carer and person with dementia. It enables them to engage socially with others and take part in activities that had previously been part of their everyday life.

"Using respite care in the early stages of the disease may also mean that in later stages, emergencies are less likely to arise and respite care can be used with less stress for the carer and less objection from the person with dementia."

The report found that 27 per cent of carers of people with dementia who need respite do not use it.

As well, compared to all carers, carers of people with dementia were 10 times more likely to say they needed respite but had not used it.

But Mr Rees said the figures underestimate the problem.

"These figures are restricted to people aged 65 and over and may also have missed out some people with mild dementia, which means there are a whole lot more people out there facing this problem," Mr Rees said.

This report also highlights the need to change the notion of respite care from being more than just a "short break" to being an opportunity for both the carer and the person with dementia to continue with their lives and engage socially.

"This report shows the critical need for respite for those caring for people with dementia as they face unique difficulties but often don't take up the respite they need," Mr Rees said.

"The unique and very challenging set of circumstances of caring for someone with dementia, including difficulties with diagnosis and accessing appropriate services, means many people who desperately need respite are just not getting it."

This discussion paper, Respite Care for People Living with Dementia, which includes recommendations from the Alzheimer's Australia National Consumer Committee - a committee of people with dementia and carers - makes two main recommendations aimed at making services more flexible and more responsive to the needs of people living with dementia.

First, a redirection of funds that are available for, but not spent on, residential respite care to the National Respite for Carers Program to purchase other respite options.

Second, to fund a trial of consumer-directed respite care in which clients and
carers have more say in the choice of respite care they want and how it is
provided.

The report recommends a number of other ways of enhancing the access of people
living with dementia to respite care:

*Expanded care education to ensure that carers understand the value of respite
and access it early.

*Establish priority for dementia respite services in the funding of new respite
services.

*Take steps to ensure the quality of dementia respite care by the development of
standards through the Aged Care Standards and Accreditation Agency.

*Recognise the special needs of younger people with dementia for respite services.

*Undertake an audit of respite care to better establish what kinds of services are most often used by people with dementia and their family carers.

"A wider mix of community care options as well as residential respite care would helps in terms of flexible services for the carer and provide a link between at home care and, later in the dementia journey, residential care," Mr Rees said.

"While the Government has increased funding for respite services and diversity of services, there now needs to be action for a still more responsive and flexible care models through consumer direction".

The printing and distribution of the report was funded by an unconditional grant from Novartis.

For interviews with Glenn Rees or a person caring for someone with dementia
please contact
Josh Rosner on
02 6278 8924 or
0407 232 212.

Some Facts About Dementia

*There are over 230,000 Australians with dementia.

*Dementia is a major factor precipitating entry into residential care.

*The independent evaluation of the Alzheimer's carer education program Living With Memory Loss reduced the barriers to carer take up of respite

-95% of carers at the end of the independent evaluation of the Alzheimer's Australia education course felt they would be more comfortable using respite compared to only 43% prior to the course

-Use of respite more than doubled from 25% of carers who were using respite at the beginning to 56% at the end of the course.

-The follow up survey found that 90% of carers said that they were much less stressed after using respite.

-The benefits of carer education were summed up by carers who said that the course had helped give them 'permission' to use respite

SOURCE: Alzheimer's Australia