What is known about this topic• Use of respite and other support services can delay institutionalisation of people with dementia.• Carers of people with dementia are low users of respite services.• Little is known about why carers of people with dementia underutilise respite services to support them in their role. What this paper adds AbstractThe use of respite services by carers has been shown to extend the length of time people with dementia can remain living in the community with family support. However, the use of respite services by informal carers of people with dementia is often low and does not appear to match carer need. To better understand how to address carers' unmet need for respite, the factors that impede respite service use must be identified. To achieve this, a narrative synthesis of published academic literature was undertaken regarding factors associated with not utilising different types of respite services utilising Anderson's Behavioural Model of Service Use. The review reinforces the importance of the assessment and matching of services to the needs of individual carers and care recipients at the local level. It also highlights the need to move beyond care pathways for individuals. To support respite use there is a need for local action to be augmented at a community or population level by strategies to address attitudinal and resource barriers that influence sub-groups of the carer population who may be more vulnerable to service non-use.

While many people with dementia require institutional care, having a co-resident carer improves the likelihood that people can live at home. Although caregiving can have positive aspects, carers still report a high need for respite. Despite this need, the use of respite services for carers of people with dementia is often low. This article investigates carer beliefs regarding out-of-home respite services and why some carers do not utilise them. A total of 152/294 (51.7%) carers of community-dwelling people with dementia (NSW, Australia) who were sent a survey completed it (November 2009-January 2010). Despite reporting unmet need for both services, 44.2% of those surveyed were not utilising day respite and 60.2% were not utilising residential respite programmes. Binary logistic regression models were used to examine factors associated with non-use using the Theory of Planned Behaviour within an expanded Andersen Behavioural Model on a final sample of 113 (due to missing data). The model explained 66.9% of the variation for day centres, and 42% for residential respite services. Beliefs that service use would result in negative outcomes for the care recipient were strongly associated with non-use of both day care [OR 13.11; 95% CI (3.75, 45.89)] and residential respite care [OR 6.13; 95% CI (2.02, 18.70)] and were more strongly associated with service non-use than other predisposing, impeding and need variables. For some carers who used services despite negative outcome beliefs, the benefits of respite service use may also be diminished. To improve use of out-of-home respite services in this vulnerable group, service beliefs should be addressed through service development and promotion that emphasises benefits for both carer and care recipients. Future research utilising behavioural service models may also be improved via the inclusion of service beliefs in the study of health and social service use.

Despite the importance and advantages of including people with dementia in research, there are various challenges for researchers and participants to their involvement. This article draws on the literature and experiences of a diverse group of authors, including a person with dementia, to provide recommendations about conducting research with people with dementia. Particular attention is given to in-depth interviews as a qualitative technique. More specifically, topics discussed include interview guide preparation, recruitment, obtaining consent/assent, conducting effective interviews, analysis and interpretation of data, effective communication of research findings, and reflections and recommendations for maintaining researcher and participant health. Given the current obstacles to participation in research of people with dementia, this is a timely article providing useful insights to promote improved outcomes using in-depth interviews.

Addressing the under utilisation of respite services in caregivers of people with dementia is an important task to improve social support amongst this vulnerable group. This paper utilises theory to conceptualise the behavioural, normative and control beliefs that caregivers of people with dementia associate with the use of out of home day centers for respite. Interviews and focus groups with 36 caregivers were undertaken to explore the beliefs of both users and non-users of services. Whilst service users held positive beliefs, non-users perceived negative outcomes for the care recipient with dementia, or faced barriers associated with their behavioural or physical needs. To address negative perceptions, nurses may need to promote the benefits of day centers for both caregiver and care recipient. However, improvements in program activities and environments, staff development and caregiver support are also required to address negative beliefs and meet the needs of those currently not accessing care.

Understanding the beliefs that caregivers of people with dementia have in regard to the use of residential respite may inform strategies to address low service utilisation. In this article, the application of theory in qualitative research with 36 caregivers provides insight into why most delay service use. Although some believe that service use may increase caregiving longevity, others position service use in conflict with normative values, and may hold beliefs that negative outcomes will result from utilisation. To address caregivers' beliefs to support service use, improvements are required to service promotion, as well as to models of care.

Low levels of public understanding can contribute to the fear, stigma and social exclusion associated with living with dementia. Dementia friendly communities aim to address this by empowering people with dementia and increasing their social inclusion. As a part of a Community Based Participatory Action Research (CBPAR) process, a multicomponent dementia friendly community intervention supported: research; the establishment of a Dementia Advisory Group and Alliance; an awareness campaign and education in community organisations. Educational events were co-designed and co-facilitated by people with dementia and their care partners. To assess project reach and changes in attitudes of community members, two cross sectional surveys were conducted with adults (aged over 18 years) using validated scales. Independent samples t-tests compared responses to the surveys prior to the commencement of the project (2014) and two years later (2016). In 2016, respondents showed increased agreement with the statements: 'People with dementia participate in a wide variety of activities and interests,' and, 'It is easy to find out about dementia friendly services or organisations in Kiama'. Respondents who attended an educational event reported less negative views about how they themselves would feel if they were diagnosed with dementia compared with respondents who did not attend an event. CBPAR appears useful to support the involvement of people with dementia and the engagement of the community to improve awareness of dementia services. The direct involvement of people living with dementia as spokespeople and educators was an effective way to improve positive attitudes and reduce the negative stereotypes associated with living with dementia. Further research is needed to compare different approaches to the creation of dementia friendly communities in different locations, and to establish the extent to which local interventions are useful to complement efforts to raise awareness of dementia at a national level.

This article details results from qualitative research with caregivers in regard to the beliefs they associate with the use of in-home respite services. Outcomes are perceived by caregivers in relation to care recipient personal safety and the avoidance of negative consequences through the provision of supervision in the caregiver's absence. Use of in-home services challenges normative beliefs for some caregivers, particularly for spousal caregivers who feel it is their role to provide assistance that is needed in the home. Likewise, perceived inflexibility and the inability of in-home services to provide responsive and personalized care make the use of in-home services difficult and may inform control beliefs. Implications are discussed in relation to community care pathways and the promotion and development of in-home respite services to better target caregiver beliefs and respond to caregiver perceived needs.

This study is the first to examine correlates of attitudes towards dementia in an Australian sample. Future research could improve understanding of distinct factors associated with dementia and lead to strategies to reduce stigmatised views of people with dementia in the community.