More flexible service offerings would encourage the greater uptake of respite services by caregivers of those with dementia, an upcoming dementia forum will hear.

Lyn Phillipson, associate director of the Centre for Health Initiatives at University of Wollongong, said that despite the high needs and demands of caring of somebody with dementia, carers of people with dementia were relatively low users of respite services.

Dr Lyn Phillipson
Dr Lyn Phillipson

“This is despite the fact that when we survey them, they constantly tell us that respite is one of their critical needs,” Dr Phillipson told Australian Ageing Agenda ahead of her presentation at the Living Well, Dying Well forum, to be hosted by BaptistCare in September.

Dr Phillipson will discuss the barriers currently preventing some caregivers from accessing respite care at the forum, which is aimed at helping service providers across Australia improve the quality of care provided to people with dementia.

“Respite is really important for both the carer and the person for dementia in the context of a life that can become, for some people, socially isolated and quite limited in terms of opportunities to continue with other activities and interests,” said Dr Phillipson

Dr Phillipson’s research has looked at attitudes of carers towards dementia services and ways to improve engagement.  She hopes to encourage attendees at the forum to think about their respite services from the perspective of the caregiver.

Through her research, she has highlighted key five areas in which carers want respite to be more flexible:

  • the location of services,
  • the timing of when services could be provided,
  • the activities available during respite,
  • staffing issues
  • how funding could be used.

With regards to location, she said many carers wanted respite options that matched the needs and wants of the person with dementia; some may prefer to stay at home, while others, such as those who are social, may enjoy an outing or stay at a day centre.

Dr Phillipson said that during her research, people with dementia and their carers had talked to her about the need for meaningful and purposeful activities. She said respite care should be designed around this, and that it was unreasonable to expect each person in respite care to enjoy doing the same activities.

During respite sessions, many carers had a preference for the same staff to attend to the person with dementia each time, so there was a chance to build a relationship and trust.

Timing was also a key issue, for both short-term and more extended periods of care.

For the carer, the critical thing might be when they want that respite. Maybe they’ve not been able to go to their book club and it meets in the evenings, but the respite service is only provided in the day,” she said.

Dr Phillipson said her talk would also encourage respite providers to think about the way they promoted their services, to help dispel some of the stigma that some carers may have about respite, such as that it was only an option for when they were no longer coping well.

“A lot of carers have that real sense of duty that this is their job, and that if they’re good spouse or a good child, then they’ll be able to provide the care,” said Dr Phillipson.

“What we really want to say is actually, respite use is good for you and good for the person with dementia, especially if you use it early and use it frequently.”

Living Well, Dying Well will be held at Sydney Olympic Park on 14 September. Registration information is available here

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