Abstract
BackgroundResearch highlights the need for carers of people with dementia to acquire relevant and timely information to assist them to access appropriate respite services. Unfortunately, negative experiences of information-seeking can create additional stress for carers and contribute to delays in up-take, or not using respite services at all.MethodsCross-sectional survey data was collected from a convenience sample of n = 84 carers of older people with dementia living in the Illawarra-Shoalhaven region of NSW, Australia. We assessed knowledge, attitudes, information seeking behaviours, and unmet need for respite services in 2016, following national aged care reforms.ResultsOver the previous 12 months, 86% of carers sought respite service information. The majority (73%) of all carers reported an unmet need for respite services, and were relying on personal networks to provide support for respite information. Few utilised the new government gateway ‘My Aged Care’ phone line (11%) or website (25%). However, 35% used a pre-existing helpline to access short term or emergency respite. We found a preference for interpersonal information sources, including local doctor (65%), professionally and volunteer led carer support groups (49%), and family and friends (46%). Those using four or more information sources showed higher capacity to name local respite services. Respite service information seekers were more likely to be caring for someone with behavioural problems, to have received assistance to access services, and to have used respite services in the past 3 to 6 months.ConclusionsNew reforms in the Australian aged care sector have not adequately responded to the needs of carers of people with dementia for respite service information and support. Wider, community-based messaging promoting positive service options and the provision of active personal support is required to address the unmet need for respite in carers of people with dementia.
Highlights
Research highlights the need for carers of people with dementia to acquire relevant and timely information to assist them to access appropriate respite services
Research objectives This study aimed to explore the knowledge, information seeking behaviours, and perceived need for respite of carers of people with dementia following aged care reforms in Australia
Despite most receiving some form of support, many carers reported an unmet need for respite services
Summary
Research highlights the need for carers of people with dementia to acquire relevant and timely information to assist them to access appropriate respite services. In Australia, dementia affects almost 1 in 10 people aged 65 and over, with estimates of 354,000 in 2016, and its prevalence increasing by 40% from 2006 to 2016 [2]. While some people with dementia require institutional care, the vast majority live at home [3, 4]. Having a co-resident carer increases the likelihood that people with dementia will live at home longer [5]. Formal services in the community can assist people with dementia and their carers via: help with home duties; support through counselling services and support groups; and the provision of ‘respite’ services or substitute care [6]. We are focused on engagement with formal respite services which typically include planned and emergency services in-home, centre-based, out-of-home or short stays in residential care services [7]
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