Carers’ perspectives of respite care in Australia: An evaluative study
Beverly O Connell
Southern Health - Deakin University, Australia
Mary T Hawkins
School of Nursing Deakin University and University of Melbourne, Australia
Joan Ostaszkiewicz
Deakin University, Melbourne, Australia.
Lynne Millar
Deakin University, Melbourne, Australia.
PP: 111 - 119
Abstract
Caring for someone with dementia is burdensome and challenging. In Australia, respite services help carers to cope with these demands. In this descriptive study, 62 carers of people with dementia provided information on their use of respite care, its effectiveness and their satisfaction with services provided during the preceding 12 months. Results indicated that carers used day centre, in-home, residential, regular outings and cottage care. The main reasons for use were to assist with managing care, take a break, or attend to health problems. Although 78% of carers rated respite as beneficial to their care recipients, most suggested areas that required attention. Improvements included the need for more time and flexibility, better quality and more permanent staff, improved communication, bureaucracy, administration and affordability. Respite providers need to recognize these limitations and develop strategies to improve the delivery of diverse respite care for carers of people with dementia.
Keywords
Respite care, dementia carers, community care, nursing
Article Text
The wellbeing and support of carers looking after people with dementia in the community is an important issue of concern in health, social and policy areas. In Australia, there are increasing numbers of spouse and family carers playing critical roles in providing support to people with dementia and thereby enabling them to remain living in the community (in real terms, Upton & Reed 2005). Caring for a person with dementia is a complex and challenging task that weighs heavily on carers. Consequently, carers themselves require support to assist them in their care giving roles. One form of carer support provided by services is termed respite care. Respite care makes alternative caring arrangements for people with dementia thereby providing carers with short-term relief from their caring role and enabling them to take a break. Respite care has been widely embraced in most developed countries as a valid and necessary extension of conventional health care for carers (Jeon et al 2005).
Respite care is available Australia-wide and is primarily funded through the National Respite for Carers Program (Department of Health and Ageing 2011). While usage of respite services increased from 20,500 people in 2003-04 to 31,500 people in 2007-08, there has been a corresponding reduction in government expenditure per respite service user by 16% in real terms (Australian Institute of Health and Welfare 2009). This represents a downward trend from an average of 12.1 per respite user per week in 2003-04 to 10.5 hours per week in 2007-08.
Although research on respite care has been undertaken in several Australian states such as New South Wales (NSW, Jeon et al 2007; Witt et al 2004), Queensland (QLD, Jardim & Pakenham 2010; Neville & Byrne 2008; Stockwell-Smith et al 2010) and Western Australia (Hancock & Jarvis 2005; Hancock et al 2006), to date no comparable research has been undertaken in Victoria. Relevant to the present study, findings from previous research suggests that demand outstrips supply, more flexibility in delivery is needed, respite needs to meet the care recipients' and carers' needs (Jardim & Pakenham 2010; Witt et al 2004), and carers need more understanding and knowledge about the types of respite available (Jeon et al 2007), as their lack of knowledge was a barrier to accessing respite care (Stockwell-Smith et al 2010).
Respite care is highly valued by carers (Hancock & Jarvis 2005; Shanley 2006), provides them with a much needed rest (Neville & Byrne 2008), and has demonstrated improvements in carers' mental and physical wellbeing (Ballesteros et al 2004; see Neville & Byrne 2008 for contra finding). The wellbeing and social support of carers is an important issue as any deterioration in their health can lead to hospitalisation for both the carer and their care recipient. Currently, in Australia there are a number of different types of respite care services available that are provided both in (in home) and out of the home. Respite care provided out of the home includes outings or excursions of up to one day (regular outings), day care in a community centre (day centre), and overnight care in a house or cottage (cottage; usually for short periods overnight or for a weekend), or in residential care facilities (residential care; usually for more than a few days). Services are provided either through a planned booking procedure or in response to emergency requests by a range of services, including community, private, and church or charitable organizations.
Although there are a number of different types of respite care services, there is a lack of information on the effectiveness of these services to meet the needs of carers and their care-recipients, in particular on those caring for people with dementia (Bruen & Howe 2009). The unique needs of carers for different types of respite should also to be considered in service delivery (Sussman & Regehr 2009). As respite care in Australia is modelled on the needs of the care recipient, the needs of carers are often overlooked by human services (Glendinning 2003). It is therefore necessary to evaluate respite services using information on service utilisation, and carers' perspectives about the quality, usefulness and effectiveness of services. It is also useful to evaluate the care in terms of its impact on the care-recipient. This information will assist nurse managers in respite and residential care services to better plan the way in which respite care is delivered.
The aim of this study was to examine carers' experiences of using all types of respite care available and their views on:
- The reasons for use
- The effect that respite has on carers and their care recipients
- Their levels of satisfaction with respite services and suggestions for improvements.
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