Caring for an elderly frail person is hard work. The media have referred to some carers as ‘the sandwich generation' - people who are simultaneously working, looking after children and looking after elderly relatives either living in the same house or living separately. It is not surprising, then, that carers need a break and frequently turn to respite care for the aged person in their care. While there are clear temporary benefits for the family carer, the benefits for the elderly care recipient are less clear cut, and depend on the expertise of the respite care staff to ensure that the experience does not lead to more stress when the person returns home. And residential care providers are sometimes reluctant to provide respite care services at all.
This article describes respite care in Australia and the barriers to use of respite care. It also discusses respite care from the perspectives of the family carer, the professional service providers and the older person in care.
There are a number of forms of respite care available for Australian carers. The main forms are: (1) residential or overnight respite; (2) day centres; and (3) in-home respite. Overnight respite is provided in residential aged care facilities and requires approval from an Aged Care Assessment Team. Around Australia there are about 400 day centres or planned activity groups run by local councils or not-for-profit service providers to groups of older people who attend a facility during the day. In-home respite is provided in the care recipient's home while the carer goes out or takes a break while the care recipient is occupied. Other types of respite are less commonly available, such as: (1) that provided privately by supported residential care services; (2) short breaks provided through the National Respite for Carers Program or with Commonwealth Respite Centre Program brokerage funds, or State carer support programs; (3) overnight short stays provided in a respite house with brokerage funds from the Commonwealth Respite Centre Program; or (4) short stay facilities such as Tregenza House in South Australia or Burringiri House in the ACT.
A study of the use of respite by carers of people with dementia (Newman, Doyle, Ward & McKenna, 1997) found that barriers to using respite services could be grouped into three main areas:
One of the most significant barriers to respite usage among carers of people with dementia is the attitude of the carer to their caring role. While carers are in a mindset of taking responsibility for the care recipient, the relinquishing of that role, even temporarily, to another person requires a change of attitude from one in which the carer may feel isolated or solely responsible for the care of the person, to feeling that there is help available and the caring role can be shared.
Another barrier is the inflexibility of the respite programs. Flexibility is a word that has repeatedly cropped up in literature on different respite care models. Flexibility is defined as providing a number of different options for respite so that carers can choose the option which suits their circumstances the best. Models that have provided carers with a number of options for the delivery of respite are the ones with the greatest perceived success. The programs offered need to be arranged at a suitable time or location, or the activities offered may be considered unsuitable for the care recipient.
The combination of these three factors - carer, care recipient and health service factors - can mean that the respite care experience is less than satisfactory, and is only used as a last resort when the caring has become too much for the carer.
Caring for older people has a high physical and mental health cost. Research into caregivers has consistently shown that carers have poorer health, lower life satisfaction and greater stress than non-carers. Carers have been found to have high rates of anxiety and depression in a number of studies (Dow et al., 2004).
Carers of people with dementia often find their role very stressful as they cope with the loss of their loved one as they knew them, at the same time as coping with new behaviours that may be associated with deterioration due to the disease.
Respite gives temporary relief from the stress and burden of caring. It has been shown to provide decreases in perceived stress, burden, anxiety, and somatic complaints, and increases in morale (Sorensen, Pinquart & Duberstein, 2002). However carers do not use formal community services as much as they could to support them in their caring role, and that includes respite care.
Some people are more likely to want to use respite than others. Dal Santo et al. (2007) found that respite users were more likely to be caring for someone with ADL care demands and physical health problems, while users of counselling services sought relief from emotional and psychological symptoms of the stress process. Spousal caregivers are more likely to provide hands-on assistance, while adult children are more likely to seek outside assistance through respite (Montgomery & Kosloski, 1999).
Many service providers do not offer residential respite in aged care facilities, despite there being government funding available. In 2001-02 overnight respite was provided to over 45,000 individuals in residential care facilities and close to one million bed days of respite were used (Howe & Doyle, 2003). However the availability of residential respite is quite patchy, with some areas having much more respite available than others. For example, metropolitan regions of Victoria have very low use of residential respite, while rural regions have higher use. This is because of the range and type of residential facilities that are willing to provide respite. Small, private residential aged care facilities tend not to provide residential respite, and low care residential respite is more freely available than high care respite (Howe & Doyle, 2003).
From the service provider's perspective, respite residents are challenging. The amount of intake assessment is the same or greater than that required for a permanent resident. Staff are unfamiliar with the person, and just as everyone settles into a routine, the person goes home again, only to be replaced by a new stranger.
Surprisingly little research has been carried out on the elderly care recipient's view of respite. While there are clear temporary benefits for the family carer, the benefits for the care recipient are less clear cut, and depend on the expertise of the residential care staff to ensure that the experience does not cause confusion and lead to more stress when the person returns home. This is particularly the case when the person has dementia.
A recent Cochrane review (Lee & Cameron, 2004) concluded that there was very little good evidence about the effect of respite care on care recipients with dementia or their carers. This is an important area for further research.
Respite care plays an important role in maintaining older people in the community for as long as possible. Some care recipients use respite care as a ‘try before you buy' experience, so it is important that the respite care experience is a positive one to assist with the eventual transition to living in permanent residential care. A successful respite program requires special expertise on the part of care staff to cope with the disruption to the care recipient's routine, especially if the person has dementia. Without flexible respite that can adapt to the care recipient, rather than the care recipient having to adapt to the respite, then the arrangements will not be satisfactory.
Consumer perspective on respite
For ten years I was a ‘sandwich generation' carer of our new son and my elderly disabled mother, who both arrived at once. Following my father's death I became the primary carer of my elderly mother who had previously been left with severe physical but no mental disabilities as a result of a car accident. Nothing in my training as a psychologist or gerontologist really prepared me for the emotional rollercoaster of caring for our newly expanded family.
Respite turned out to not work well for our situation. One case manager refused my request for in-home respite - she said I already had respite when I went to work, not understanding that it was a solution to Mum's isolation and my anxiety about leaving her alone and unstable on her feet. Residential respite was also not flexible. We couldn't find a residential care facility willing to provide respite for the period we wanted, so my husband's overseas sabbatical was cancelled - the period of time was too long for respite care providers to ‘tie up their respite bed', and we were not willing to admit Mum permanently to residential care, with all the anxiety that would have caused in her mind, when she would have come home to us in a few months. As Mum's condition deteriorated, respite services were even less viable for us. In the final stages of Mum's illness, wonderful palliative and hospice care staff treated her as an ordinary person, while staff attitudes in residential care were often patronising.
Dal Santo, T., Scharlach, A., Nielsen, J., & Fox, P. (2007). A stress process model of family caregiver service utilisation; factors associated with respite and counselling service use. Journal of Gerontological Social Work, 49, 29-49.
Dow, B., Haralambous, B., Giummarra, M., & Vrantsidis, F. (2004). What carers value; review of carer literature and practice. Report for Department of Human Services, Victoria.
Howe, A., & Doyle, C. (2003). Overnight respite project: provision, use, issues and options. Report prepared for the Australian Deparment of Health and Ageing.
Lee, H., & Cameron, M.H. (2004). Respite care for people with dementia and their carers (Review). Cochrane database of systematic reviews 2004, Issue 1. Art No: CD004396. DOI: 10.1002/14651858.CD004396. pub2.
Montgomery, R., & Kosloski, K. (1999). Family caregiving: Change, continuity and diversity. In R.Rubenstein & P.Lawton (Eds.), Alzheimer's Disease and Related Dementias: Strategies in Care and Research. New York, NY: Springer Publishing Company.
Newman, M., Doyle, C., Ward,S., & McKenna, M. (1997). Respite care needs of carers of people with dementia. Canberra: Alzheimer's Australia.