Respite Care in Dementia: Australian Consumer Perspectives

Wednesday, 1 August 2012: 1:50 PM

Elizabeth R. A. Beattie, PhD, RN
Dementia Collaborative Research Centre, School of Nursing and Midwifery, Queensland University of Technology, Brisbane, Australia
Elaine L. Fielding, PhD
Dementia Collaborative Research Centre, School of Nursing and Midwifery, Queensland University of Technology, Brisbane QLD, Australia
Margaret Readford, RN, BSN
Dementia Collaborative Research Centre, School of Nursing and Midwifery, Queensland University of Technology, Brisbane QLD 4059, Australia
Christine Neville, PhD, RN
School of Nursing and Midwifery, University of Queensland, Ipswich QLD, Australia
Meredith Gresham, BAppSciOT
HammondCare, Sydney NSW 2000, Australia

Learning Objective 1: The learner will be able to understand the Australian system of respite care for people with dementia from the caregiverís perspective.

Learning Objective 2: The learner will be able to translate that understanding into policy implications for the funding, provision, and allocation of respite care.

Purpose:

The majority of people with dementia living in the community are cared for by unpaid family members, and respite is one of the key government-funded services that enables these caregivers to continue caring at home. From an Australian government perspective, providing funding for respite care is far less expensive than for residential care.  In order to better inform policy and funding, a survey of Australian caregivers was conducted recently to gauge experiences with respite care.

Methods:

A cross-sectional online or phone survey (n = 336) included a mixture of closed- and open-ended questions about general caring support; types, frequencies, and satisfaction with respite services used; reasons for using (or not using) respite; and characteristics of the caregiver and the family member with dementia.

Results:

Over three-quarters (77%) of the caregivers had used some type of respite service, including in-home, day care centre, residential, emergency, and “other” types.  Caregivers’ use of services, and their satisfaction with them, ranged widely. The majority of caregivers (85 – 94%, depending on type used) reported being satisfied with respite services from their own perspective.  The lowest satisfaction level (62%) reported was for residential respite from the person with dementia’s perspective (as reported by the caregiver).

Most caregivers who had never used respite services either had not (yet) needed to or the person with dementia had refused to participate.  Others lacked sufficient information; found it unaffordable; or too inflexible for their needs. 

Conclusion:

Some policy-relevant conclusions are possible:  1) caregivers are grateful for and mostly satisfied with respite services received; 2) caregivers would like to see increased flexibility, availability, and higher individual allocations of respite services; and 3) the current Australian system of respite care is not succeeding when the person with dementia has challenging physical or behavioral symptoms (such as incontinence or wandering).