Seeking respite: issues around the use of day respite care for the carers of people with dementia

Abstract

Ageing in Place policies have transferred responsibility for many frail elderly people and those living with dementia from residential to in-home care. Despite this placing a greater obligation on families, in Australia carers continue to under-use day respite services. This qualitative design study identified issues around the use of day respite care from the perspective of the family carer, focusing on barriers to attendance and strategies to facilitate attendance. Telephone interviews were held in 2007 with Tasmanian carers whose family member refused to attend day respite care (ten carers) and those whose family member attended (17). Carers considering day respite care were often overwhelmed by the quantity of information, confused about the process, and worried about the recipient's safety in an unfamiliar environment. They felt anxious about public acknowledgement of the condition leading to fear of embarrassment. Day respite care users appreciated the break it provided them and the opportunity for their family member to socialise. To facilitate a greater uptake of day respite care, reliable information sources and strategies to help carers deal with the emotions they face on a daily basis, together with a wider social acceptance of dementia, are important. Furthermore, carers need an opportunity to talk with others, enabling them to gain support from those who have successfully introduced a family member to day respite care.

Needs of people with dementia and their spousal carers: A study of those living in the community

“…In general, participants were grateful for the support they received; however, they recognised serious downfalls in institutional supports. Carers in this study identified reasons why they did not use services, and low utilisation was due, in part, to services not meeting their expectations for quality, relationship‐based care, a finding consistent with previous studies . Participants were more likely to use services when services were positive, and family, friends and health professionals provided the right information at the right time …”

“…Views of people with dementia are commonly not included in research; however, inclusion of people with dementia in qualitative research is important in developing personalised and responsive services . Research concerning dementia and services in the Australian context has focussed on experiences of carers who use services and reasons for service use (or non‐use) but has not explored how the needs of carers and the people with dementia change as dementia progresses . A broader discussion of needs experienced by people with dementia and their carers, respectively, is required to develop services and systems that will benefit those living in the community .…”

“Being Free Like a Bird”―The Meaning of Being an Informal Caregiver for Persons with Dementia Who Are Receiving Day Care Services

“…In contrast, receiving day care services for their partners with dementia meant that informal caregivers could experience the feeling of being free to do whatever they wanted to do for some hours and enjoy having a breathing space. Experiencing being free and have some relief from the caregiver burden is crucial for the informal caregivers' opportunities to have a lifestyle with leisure or time for themselves [30]. Phillipson and Jones (2012) found that informal caregivers who use day care services tend to have accepted their own needs for breaks as legitimate [31].…”

Information-sharing with respite care services for older adults: a qualitative exploration of carers' experiences

“…In the United States, United Kingdom and Australia, research has identified the challenges of providing effective respite care, not least in terms of encouraging uptake and ongoing engagement with services (e.g. Greenwood et al 2012, Robinson et al 2012, Phillipson et al 2013, McPherson et al 2014, Neville et al 2014). Shaw et al's (2009) systematic review identified three recurrent themes: carers had limited knowledge about availability of respite services, reported feeling frustrated by the processes of being assessed for services and could not access services which met their expectations.…”