Participation in qualitative research frequently relies upon recall and verbal expression, which may be difficult for some people with dementia. While the use of arts-based and visual methods are transforming dementia care, exploratory research and evaluation methods have lagged behind with regard to the use of innovative qualitative approaches. This scoping review identified innovative qualitative methods that have been used to effectively engage and involve people with dementia in social and health research. Systematic searches of academic databases, Google Scholar, and hand searches identified 24 peer-reviewed articles published since 2010 for inclusion. Analysis focused on a description of both the motivation and methods ascribed by the researchers and how the capacities of people with dementia were engaged as part of the research process. The most frequently used innovative method was Photovoice. Action research, case study, narrative production, ethnography, participatory filmmaking and theater, co-research, and mixed methods were also used. Regardless of methodology, most studies used a participatory approach that incorporated visual methods alongside adapted semistructured or unstructured interviews. Researchers were focused on inclusion, empowerment, self-expression, flexibility, and communication when selecting methods. Providing an appropriate research environment and committing time for repeat contact, observation, and engagement were important considerations.

The 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 (1990-2011) 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.

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.

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.

Objectives: To investigate associations between dementia-attitudes and help-seeking intentions. Method: An online survey of 611 Australian adults (45–60 years) assessed dementia-related attitudes and help-seeking intentions in response to two scenarios of an experience of early dementia: for themselves (Scenario 1); and for a significant other (proxy help-seeking) (Scenario 2). Logistic regression models examined the relationship between four dementia-related attitudes (labelled Personal Avoidance, Fear of Labelling, Fear of Discrimination and Person Centredness) and help-seeking intentions. Results: Most participants indicated they would seek help from a general practitioner (GP) for themselves (82.2%) or for a proxy (78.7%) in response to the scenarios. Whilst only 7.2% indicated they would seek help from no-one, 21.3% would delay seeking help. In response to Scenario 1, Personal Avoidance and Fear of Labelling were associated with intentions to delay help-seeking. Fear of both Labelling and Discrimination were associated with intentions to seek help from no-one. In response to Scenario 2, Personal Avoidance was associated with intentions to delay proxy help-seeking and a reduced likelihood of seeking help by phone or and with Fear of Discrimination, via a GP. Fear of Labelling was also associated with an intention to delay proxy help-seeking. Conclusion: Efforts to improve help-seeking for dementia should address attitudes relating to stigma including negative labelling and a desire for the avoidance of people with dementia. Fears relating to discrimination indicate a need to build public confidence regarding the capacity of the health and workforce sectors to support people with dementia ethically and appropriately.

Globally, there is an urgent need for solutions that can support our aging populations to live well and reduce the associated economic, social and health burdens. Implementing smart technologies within homes and communities may assist people to live well and ‘age in place’. To date, there has been little consultation with older Australians addressing either the perceived benefits, or the potential social and ethical challenges associated with smart technology use. To address this, we conducted five World Cafés in two Australian states, aiming to capture citizen knowledge about the possibilities and challenges of smart technologies. The participants (n = 84) were aged 55 years and over, English-speaking, and living independently. Grounding our analysis in values-based social science and biomedical ethical principles, we identified the themes reflecting the participants’ understanding, resistance, and acceptance of smart technologies, and the ethical principles, including beneficence, non-maleficence, autonomy, privacy, confidentiality, and justice. Similar to other studies, many of the participants demonstrated cautious and conditional acceptance of smart technologies, while identifying concerns about social isolation, breaches of privacy and confidentiality, surveillance, and stigmatization. Attention to understanding and incorporating the values of older citizens will be important for the acceptance and effectiveness of smart technologies for supporting independent and full lives for older citizens.