• Virtual Aged Care Reform Conference 2020
  • Virtual Aged Care Reform Conference 2020

Stigma and style of care may explain underuse of respite

Research into the effectiveness of dementia-based respite care in delaying entry into residential aged care is lacking, and these services remain largely underused. Andrew Hanna, James Donnelly and Christina Aggar summarise some of the key reasons for this and propose methods to improve the quality and uptake of these services

Cited as one of the most frequently expressed needs of caregivers (Carers Australia 2017), respite care is thought to offer several benefits for people with dementia and their informal caregivers. Likewise, carers who choose to use these services report high levels of satisfaction with the support received and have identified respite as being critical to their caring efforts (Madeo et al 2008; O’Connell et al 2012).

However, despite high anecdotal support from carers, statistics indicate that 87% of dementia carers in Australia have never used a respite service (Johnson 2006). While several explanations are considered, this finding suggests that the forms of respite care currently available in Australia do not meet the needs of the people who require them (Brandão et al 2016; Phillipson et al 2019). There is also limited empirical support for the potential benefits of respite care (Lee & Cameron 2004; Maayan et al 2014), as well as recognised methodological and practical challenges to designing quality outcome studies in this area (Zarit et al 2017).

This article summarises some of the critical issues related to the underuse of dementia based-respite services, with an emphasis on Australian research. It begins with a discussion of the known benefits and risks of engaging respite for people with dementia and their informal carers. Explanations for the underuse of these programs are then reviewed in the context of caregiver perceptions and complaints about service quality.  

Additionally, the social consequences of framing dementia within a biomedical model are considered, with a focus on the implications for improving respite services and facilitating a much-needed culture change within the Australian aged care sector.

Originally published in the Australian Journal of Dementia Care print edition,
Vol 9 No 3, July/Aug/Sept 2020

Download the PDF version of this article

Carers have consistently expressed a preference for services that provide age-appropriate social and recreational activities. Photo: Freepik.com  

Benefits and risks

O’Connell et al (2012), explored the experiences of Australian caregivers of people with dementia who attended private or public respite programs. The authors identified three primary reasons for carers using these services, including assistance with managing care, taking a short break, and so they could attend to their own health needs (O’Connell et al 2012). Close to 80% of the carers surveyed also believed that accessing respite care was beneficial to the person for whom they cared (O’Connell et al 2012).

Similarly, in another study involving 100 Australian dementia caregivers, more than half reported physical and emotional rest, and relaxation as the primary reasons for using respite (Neville & Byrne 2008). Other carers have stated that these services helped them to gain confidence and information about the caring role, reduce feelings of isolation, and validate their experiences (Hancock et al 2007). Use of day-respite services has also been associated with reduced biomarkers of stress among caregivers (Liu et al 2017), as well as improvements in sleep quality (Lee et al 2007) and general health (Liu et al 2015).

Investigations of the influence of respite care on levels of caregiver burden have, however, revealed mixed results and the efficacy of respite in this regard remains unclear (Gresham et al 2018; Lee & Cameron 2004; Vandepitte et al 2016). For instance, there is evidence to suggest that respite use is associated with an increased risk of institutionalisation (Vandepitte et al 2016). However, it is hypothesised that this is primarily due to caregivers accessing services late in the progression of dementia, or that respite services present a transitional stage from home to residential care (Shaw et al 2009; Tang et al 2011).

There is also the possibility that respite is, at times, used to trial residential services and that carers may change previously held negative views about institutional care, especially when their experiences with respite are positive (AIHW 2012; Shaw et al 2009).

Other factors which negate the benefits of respite care include having difficulties adjusting to the service and the limited effect of respite to reduce the frequency of psychological and behavioural symptoms (Witt et al 2004). In fact, some carers have described a worsening of the intensity of responsive behaviours in their family members following periods of respite (Phillipson et al 2014).

Additionally, brief stays in residential respite have been shown to negatively affect client quality of sleep, although these effects seem to be limited to the time spent in care (Lee et al 2007). Other authors have drawn attention to the risk of respite disrupting client routines and emphasised that several inconsistencies in the research remain in determining the actual risks and benefits of respite (Tang et al 2011; Willoughby et al 2018).

Underuse of services

Considering the expressed demand for respite, the low uptake of these services among dementia caregivers is unexpected (Neville et al 2015; AIHW 2017; Phillipson et al 2014). This finding is likely the result of several complex, interacting factors and various explanations have been proposed.

Some authors point to the challenges associated with the accessibility of respite services, and the need for better communication and prompt referral from healthcare providers (Brodaty et al 2005; Shaw et al 2009).

The underuse of respite may also be the result of misconceptions of poor-quality service, high costs, or a lack of flexibility in service arrangements (Carers NSW 2016; Phillipson et al 2014; Phillipson et al 2013).

Other studies have indicated that there may be negative connotations with respite use, for instance, that the person with dementia is a burden, that the carer is not able to cope, or that using respite will result in deleterious outcomes (Madeo et al 2008; Neville et al 2015; Phillipson et al 2013; Robinson et al 2012).

There is an apparent need to destigmatise dementia, but destigmatising respite care itself may also be required. For example, considering the harmful effects of the language used to describe services, which can be perceived as pejorative or infantilising, may be part of the solution. Accordingly, the adoption of more socially acceptable and inclusive terms have been proposed, such as ‘restorative care’ and ‘adult or visitor programs’, as opposed to ‘respite’ or ‘adult day-care’ (O’Shea et al 2017b). There is, of course, a proportion of carers who do not see a need to use these services, or who see caring as a personal or cultural responsibility (Brandão et al 2016; Brodaty et al 2005).

Improving respite use

Research suggests that the characteristics of the respite service itself, and not those of the caregiver or person with dementia, are most influential in predicting satisfaction with respite (O’Shea et al 2017a; Phillipson & Jones 2011). Accordingly, tailoring the style of available programs to better suit the preferences and needs of carers and clients will likely improve the rate of use.

It is well documented that carers require services that are accessible, affordable, and adaptable to their changing circumstances, especially for those with degenerative conditions (Neville et al 2015; O’Connell et al 2012). Ensuring that information about available services is appropriately disseminated to potential consumers will also increase uptake and use of respite (Carers Australia 2017).

Carers have consistently expressed a preference for services that provide age-appropriate social and recreational activities, while also promoting personal growth and opportunities for learning and support (Madeo et al 2008; Phillipson et al 2013).

Nevertheless, in order to better engage carers and clients, and improve prevailing beliefs about respite care, these programs must also address the legitimate concerns about service quality (Carers NSW 2016; Phillipson et al 2019). Qualitative studies investigating carer experiences have revealed common complaints about inadequate staff-to-client ratios, repetitive or inappropriate client activities, and an inability to deliver personalised care (Neville et al 2015; Witt et al 2004).

Other carers have expressed their frustration with the limited dementia-specific expertise of staff, who appear ill-equipped to manage responsive behaviours (Johnson 2006). These staff actually complain to the client’s family, often resulting in the carers and clients disengaging from the service (Carers Australia 2017).

Following a review of predominantly Australian research, Tang et al (2011) concluded that in order to adequately meet the needs of people with dementia and their families, respite services should progress from traditional, custodial models of care to evidence-based psychological approaches. This could be achieved by strengthening referral pathways and associations with local allied health services, in addition to placing a greater emphasis on professional development programs for respite care staff (Tang et al 2011).

There are, however, several barriers to improving the quality of dementia-based respite services in Australia, not the least of which refers to unhelpful perceptions of dementia held by many, including those in the caregiving workforce.

Beyond the biomedical

To fully appreciate the significance of this problem, it is worth reflecting on the historical context in which these issues have arisen. Until recently, the predominance of international research has framed dementia within a biomedical model of disease (Davis 2004). Although a necessary stage in progressing our understanding of cognitive decline, the medicalisation of dementia is inherently deficit-focused and as such, has had a negative impact on the social construction of dementia and its care. Essentially, considering cognitive changes in this way seems to perpetuate harmful stigma, a focus on loss rather than empowerment, and the neglect of the personal experiences of individuals with dementia (O’Sullivan et al 2013).

These issues have, in turn, contributed to other concerns such as the overuse of antipsychotic medication (Ervin et al 2019) and caretaker models of respite services which aim to pacify clients or position them as recipients of care, instead of active participants (Buron et al 2008; Kirkley et al 2011).

In a review of the biomedical approach, O’Sullivan et al (2013) went so far as to argue that the medical construction of dementia is “the basis of excess disability and unequal relations that have marginalised people with dementia” (p483). While some may believe this critique to be overly harsh, there is little doubt that these traditional paradigms should give way to a renewed focus on enablement, acceptance of cognitive change, and the preserved capacity for meaningful life experiences and personal growth (Buron 2008).

Conclusion

In this spirit, person-centred approaches, such as those advocated in Montessori-based methods, may provide a useful framework for dementia-based respite services moving forward. At their core, the Montessori philosophy and methods aim to foster greater independence and encourage the client, and all involved, to work together to maintain or establish meaningful roles (Camp et al 2017; Hanna et al 2018). These authors suggest that we help develop innovative behavioural ‘ramps’ that enable clients to overcome sensory, cognitive or motor barriers to continuing what they enjoy.

Client-focused models such as this may also serve to challenge the status quo by promoting a culture of older adult care with collaboration, inclusivity, and dignity as the priorities. However, if these imperatives are to be adopted by the formal caregiving workforce, this process must begin with addressing outdated, unconstructive perceptions of dementia and aging, and ultimately, reframing the idea of ‘respite care’.

Acknowledgments and Conflict of Interests

The authors would like to thank the staff, carers and clients at Omnicare Alliance Ltd and Integrated Living Australia, without whom this work would not be possible. This research was carried out as part of a PhD candidature that was financially supported by Omnicare Alliance Ltd. The authors declare no conflict of interests.

Andrew Hanna (pictured, first right) is a registered psychologist and a doctoral researcher at Southern Cross University, Coffs Harbour, NSW, investigating a Montessori approach to dementia-based respite care; Dr James Donnelly (centre) is a registered psychologist, lecturer and PhD supervisor in the School of Health and Human Sciences, Southern Cross University, Coffs Harbour, NSW; Dr Christina Aggar (far right) is Associate Professor in the School of Health and Human Sciences, Southern Cross University, Bilinga, QLD. To follow up on this article, contact Andrew at a.hanna.23@student.scu.edu.au

References

Australian Institute of Health and Welfare (AIHW) (2012) Dementia in Australia. Cat. no. AGE 70. Canberra: AIHW. Available at: https://bit.ly/2ZQsL90.

Brandão D, Ribeiro O, Martín I (2016) Underuse and Unawareness Of Residential Respite Care Services In Dementia Caregiving: Constraining The Need For Relief. Health & Social Work 41(4) 254-262.

Brodaty H, Thomson C, Thompson C, Fine M (2005) Why Caregivers Of People With Dementia And Memory Loss Don’t Use Services. International Journal of Geriatric Psychiatry 20(6) 537-546.

Buron B (2008) Levels of Personhood: A Model For Dementia Care. Geriatric Nursing 29(5) 324-332.

Camp CJ, Antenucci V, Roberts A, Fickenscher T, Erkes J, Neal T (2017)

The Montessori Method Applied To Dementia: An International Perspective. Montessori Life 29(1) 40-47.

Carers Australia (2017) Improving Access To Aged Residential Respite Care. Available at: https://bit.ly/3eD8OXe.

Carers NSW (2016) National Survey Of Carers’ Respite Needs: Final Report. Available at: https://bit.ly/2ApKDgb.

Ervin K, Clark M, Haines H, Blackberry I (2019) Time For Australia To Revisit Antipsychotic Use In Dementia In Residential Aged Care. Australasian Medical Journal (Online) 12(5) 138-142.

Gresham M, Heffernan M, Brodaty H (2018) The Going To Stay At Home Program: Combining Dementia Caregiver Training And Residential Respite Care. International Psychogeriatrics 30(11) 1697-1706.

Hancock PJ, Jarvis JA, L’Veena T (2007) Older Carers In Ageing Societies: An Evaluation Of A Respite Care Program For Older Carers In Western Australia. Home Health Care Services Quarterly 26(2) 59-84.

Hanna A, Donnelly J, Aggar C (2018) Study Protocol: A Montessori Approach To Dementia-Related, Non-Residential Respite Services In Australia. Archives of Gerontology and Geriatrics 77 24-30.

Johnson E (2006) Respite Reconsidered: A Discussion Of Key Issues And Future Directions For Carer Respite. Sydney, NSW: Carers Australia.

Kirkley C, Bamford C, Poole M, Arksey H, Hughes J, Bond J (2011) The Impact Of Organisational Culture On The Delivery Of Person-Centred Care In Services Providing Respite Care And Short Breaks For People With Dementia. Health & Social Care in the Community 19(4) 438-448.

Lee D, Morgan K, Lindesay J (2007) Effect Of Institutional Respite Care On The Sleep Of People With Dementia And Their Primary Caregivers. Journal of the American Geriatrics Society 55(2) 252-258.

Lee H, Cameron MH (2004) Respite Care For People With Dementia And Their Carers. Cochrane Database of Systematic Reviews 2004(1) 1-23.

Liu Y, Granger DA, Kim K, Klein LC, Almeida DM, Zarit SH (2017) Diurnal Salivary Alpha-Amylase Dynamics Among Dementia Family Caregivers. Health Psychology, 36(2) 160.

Liu Y, Kim K, Zarit SH (2015) Health Trajectories Of Family Caregivers: Associations With Care Transitions And Adult Day Service Use. Journal of Aging And Health, 27(4) 686-710.

Maayan N, Soares-Weiser K, Lee H (2014) Respite Care For People With Dementia And Their Carers. Cochrane Database of Systematic Reviews (1).

Madeo A, Feld S, Spencer B (2008) Ethical And Practical Challenges Raised By An Adult Day Program’s Caregiver Satisfaction Survey. American Journal of Alzheimer’s Disease & Other Dementias 23(5) 423-429.

Neville CC, Beattie E, Fielding E, MacAndrew M (2015) Literature Review: Use Of Respite By Carers Of People With Dementia. Health & Social Care In The Community 23(1) 51-63.

Neville CC, Byrne GJA (2008) Effect Of A Residential Respite Admission For Older People On Regional Queensland Family Carers. Collegian 15(4) 159-164.

O’Shea E, Timmons S, O’Shea EO, Fox S, Irving K (2017a). Respite In Dementia: An Evolutionary Concept Analysis. Dementia 18(4) 1446-1465.

O’Shea E, Timmons S, O’Shea EO, Fox S, Irving K (2017b) Key Stakeholders’ Experiences Of Respite Services For People With Dementia And Their Perspectives On Respite Service Development: A Qualitative Systematic Review. BMC Geriatrics, 17(1) 282.

O’Connell B, Hawkins M, Ostaszkiewicz J, Millar L (2012) Carers’ Perspectives Of Respite Care In Australia: An Evaluative Study. Contemporary Nurse 41(1) 111-119.

O’Sullivan G, Hocking C, Spence D (2013) Dementia: The Need For Attitudinal Change. Dementia 13(4) 483-497.

Phillipson L, Johnson K, Cridland E, Hall D, Neville C, Fielding E, Hasan H (2019) Knowledge, help-Seeking And Efficacy To Find Respite Services: An Exploratory Study In Help-Seeking Carers Of People With Dementia In The Context Of Aged Care Reforms. BMC Geriatrics 19(1) 2.

Phillipson L, Jones SC (2011) Residential Respite Care: The Caregiver’s Last Resort. Journal of Gerontological Social Work 54(7) 691-711.

Phillipson L, Jones SC, Magee C (2014) A Review Of The Factors Associated With The Non-Use Of Respite Services By Carers Of People With Dementia: Implications For Policy And Practice. Health & Social Care in the Community 22(1) 1-12.

Phillipson L, Magee C, Jones SC (2013) Why Carers Of People With Dementia Do Not Utilise Out-Of-Home Respite Services. Health & Social Care in the Community, 21(4) 411-422.

Robinson A, Lea E, Hemmings L, Vosper G, McCann D, Weeding F, Rumble R (2012) Seeking Respite: Issues Around The Use Of Day Respite Care For The Carers Of People With Dementia. Ageing and Society 32(2) 196-218.

Shaw C, McNamara R, Abrams K, Cannings-John R, Hood K, Longo M, Williams K (2009) Systematic Review Of Respite Care In The Frail Elderly. Health Technology Assessment 13(20) 1-262.

Tang J, Ryburn B, Doyle C, Wells Y (2011) The Psychology Of Respite Care For People With Dementia In Australia. Australian Psychologist 46(3) 183-189.

Vandepitte S, Van Den Noortgate N, Putman K, Verhaeghe S, Verdonck C, Annemans L (2016) Effectiveness Of Respite Care In Supporting Informal Caregivers Of Persons With Dementia: A Systematic Review. International Journal of Geriatric Psychiatry 31(12) 1277-1288.

Willoughby M, Ibrahim JE, Ferrah N, Bugeja L (2018) Optimising Residential Respite Care In Nursing Homes: Current Problems And Solutions For A Better Future. International Journal of Older People Nursing 13(2) e12180.

Witt E, Chenoweth L, Jeon Y-H (2004) Respite Services For Older Persons And Their Family Carers In Southern Sydney. Collegian 11(4) 31-35.

Zarit SH, Bangerter LR, Liu Y, Rovine MJ (2017) Exploring The Benefits Of Respite Services To Family Caregivers: Methodological Issues And Current Findings. Aging & Mental Health 21(3) 224-231.

Want to read the other articles in this issue? SUBSCRIBE TODAY for as little as $99 to improve your practice and stay up to date on the latest in dementia research and training.

SUBSCRIBE TO AJDC