© 2019 the Authors People with dementia are publicly sharing their experiences of living with the condition and acting collectively to produce social change. Social media could support them in doing this, but no previous studies have comprehensively analysed their use of Twitter. The aims of this study were to identify how people with dementia use Twitter and examine the illness identities they create and promote online. Tweetcatcher was used to collect 2774 tweets posted over six months by 12 account holders with dementia, across three countries. Tweets were analysed thematically. Six themes were identified through the analysis: nothing about us without us, collective action, experts by experience, living with dementia not suffering from it, community, and stories of dementia. On Twitter, people with dementia are developing a collective illness identity to further a social movement that is focused on improving the lives of people with dementia. They are also communicating their personal identities by documenting their lived experiences. Twitter is being used to convey positive, rather than negative, messages about dementia. The findings of this study also show that thematic analysis can be applied to micro texts that can combine over time to form longer narratives.

BACKGROUND: the challenges of providing care for someone with Alzheimer's disease and related dementias (ADRD) have been associated with increased stress, poor mental and physical health, social isolation, and financial distress. More recently, caregiving has been associated with high rates of suicidal and homicidal ideation, but the research on these phenomena is limited. The present study analyzed a sample of blogs written by family caregivers of people with ADRD to explore thoughts of suicide and homicide expressed by these caregivers. METHODS: Blogs written by self-identified informal caregivers of people with ADRD were identified using a systematic search method and data were analyzed using a qualitative thematic analysis. RESULTS: Five themes related to thoughts of suicide and homicide by caregivers and people with ADRD were derived from the analysis: (1) end-of-life care; (2) thoughts of death and euthanasia by the person with ADRD; (3) surrogate decision making; (4) thoughts of suicide by the caregiver; and (5) thoughts of homicide and euthanasia by the caregiver. CONCLUSIONS: the results capture the reality of suicidal and homicidal thoughts among family caregivers of people with ADRD, supporting calls for more research on these complex topics and highlighting the need for changes to clinical practice to prevent thoughts from becoming behaviors or actions.

Academic researchers are increasingly asked to engage with the wider world, both in terms of creating impact from their work, and in telling the world what goes on in university research departments. An aspect of this engagement involves working with patients, carers or members of the public as partners in research. This means working with them to identify important research questions and designing studies to address those questions. This commentary was jointly written by two researchers and people with relevant caring experience for this special issue. It brings to the forefront the concerns of carers who are also involved in research as partners. The aim is to highlight their perspectives to inform future research, policy, and practice.

© 2018 Elsevier B.V. Objectives: the robotic seal, PARO, has been used as an alternative to animal-assisted therapies with residents with dementia in long-term care, yet understanding of its efficacy is limited by a paucity of research. We explored the effects of PARO on motor activity and sleep patterns, as measured by a wearable triaxial accelerometer. Study design: Cluster-randomised controlled trial, involving 28 facilities in Queensland, Australia. Nine facilities were randomised to the PARO group (individual, non-facilitated, 15-min sessions three afternoons per week for 10 weeks), 10 to a plush toy (PARO with robotic features disabled) and nine to usual care. Main outcome measures: Changes in day- and nighttime motor activity and sleep after the 10-week intervention, as measured by SenseWear® armbands, worn by participants continuously for 24 h at baseline, during two single intervention days in weeks 5 and 10 respectively, and post-intervention (week 15). Analyses followed intention-to-treat, using repeated-measures mixed-effects models. Results: After 10 weeks, the PARO group showed a greater reduction in daytime step count than usual care (p = 0.023), and in nighttime step count (p = 0.028) and daytime physical activity (p = 0.026) compared with the plush toy group. At post-intervention, the PARO group showed a greater reduction in daytime step count than the plush toy group (p = 0.028), and at nighttime compared with both the plush toy group (p = 0.019) and the usual-care group (p = 0.046). The PARO group also had a greater reduction in nighttime physical activity than the usual-care group (p = 0.015). Conclusions: PARO may have some effect on motor activity of older people with dementia in long-term care, but not on sleep patterns. Australian New Zealand Clinical Trials Registry (ACTRN12614000508673).

There is a growing body of research on the use of Twitter by people with health conditions, but it does not include people with dementia. In this brief report, we aim to: (1) determine whether people with dementia are using Twitter; (2) provide an estimate of the number of Twitter account holders who identify as having a diagnosis of dementia; and (3) examine the demographic characteristics of these account holders. Tweetcatcher was used to identify tweets containing the search terms 'dementia' or 'Alzheimer'. These data were systematically searched to locate account holders who identified themselves as having a diagnosis of dementia, and a content analysis was conducted of these account holders' profiles. Thirty account holders self-identified as having a diagnosis of dementia. The average age of account holders was 59 years and the majority were located in North America or the UK. Although the majority of account holders reported having Alzheimer's disease or did not specify a type of dementia, some rare forms of dementia were also evident. The sample consisted of relatively young account holders and contained more men, which might suggest that other groups are under-represented on Twitter. The majority of account holders considered themselves a dementia activist or were affiliated with a dementia organisation. The findings suggest that people with dementia, with varying demographic characteristics and a range of diagnoses, are active on Twitter. These account holders are more frequently male, relatively young, and dementia activists.

OBJECTIVES: to examine the within-trial costs and cost-effectiveness of using PARO, compared with a plush toy and usual care, for reducing agitation and medication use in people with dementia in long-term care. DESIGN: an economic evaluation, nested within a cluster-randomized controlled trial. SETTING: Twenty-eight facilities in South-East Queensland, Australia. PARTICIPANTS: a total of 415 residents, all aged 60 years or older, with documented diagnoses of dementia. INTERVENTION: Facilities were randomized to 1 of 3 groups: PARO (individual, nonfacilitated 15-minute sessions, 3 afternoons per week for 10 weeks); plush toy (as per PARO but with artificial intelligence disabled); and usual care. MEASUREMENTS: the incremental cost per Cohen-Mansfield Agitation Inventory-Short Form (CMAI-SF) point averted from a provider's perspective. Australian New Zealand Clinical Trials Registry (BLINDED FOR REVIEW). RESULTS: for the within-trial costs, the PARO group was $50.47 more expensive per resident compared with usual care, whereas the plush toy group was $37.26 more expensive than usual care. There were no statistically significant between-group differences in agitation levels after the 10-week intervention. The point estimates of the incremental cost-effectiveness ratios were $13.01 for PARO and $12.85 for plush toy per CMAI-SF point averted relative to usual care. CONCLUSION: the plush toy used in this study offered marginally greater value for money than PARO in improving agitation. However, these costs are much lower than values estimated for psychosocial group activities and sensory interventions, suggesting that both a plush toy and the PARO are cost-effective psychosocial treatment options for agitation.

There is a growing body of research on resilience in family carers of people with dementia, but carers' voices are noticeably absent from it. The aim of this study was to explore carers' definitions of resilience and their opinions on the factors associated with resilience. Twenty-one in-depth interviews were conducted in Australia with people who were currently, or had previously been, caring for a family member with dementia. Transcripts were analysed thematically and three themes emerged: the presence of resilience, the path to resilience, and characteristics of the resilient carer. Although carers struggled to define resilience, the vast majority considered themselves resilient. Carers identified a range of traits, values, environments, resources, and behaviours associated with resilience, but there was no consensus on the relative importance or causal nature of these factors. Carers also considered resilience to be domain- and context-specific, but did not agree on whether resilience was a trait or a process. These findings highlight both the importance of including carers' voices in resilience research and the limitations of the extant literature. There is much to be done to develop a field of carer resilience research that is theoretically sound, methodologically rigorous, and reflects the lived experience of carers. A model is provided to prompt future research.

© 2017 Elsevier B.V. Objectives to objectively measure over a 24-h period the daytime and nighttime levels of physical activity and sleep patterns of older people with dementia living in long-term care facilities. Study design Nested within a larger research program, this cross-sectional study involved 415 residents, aged ≥60 years, with a documented diagnosis of dementia, from 28 long-term care facilities in south-east Queensland, Australia. Main outcome measures Residents wore SenseWear® activity armbands continuously for 24 h, with data recorded for: step count; total energy expenditure; metabolic equivalent of task (MET); and the amount of time spent physically active, lying down, awake, and asleep. Residents’ levels of cognitive impairment (assessed using the Rowland Universal Dementia Assessment Scale) and agitation (assessed using the Cohen-Mansfield Agitation Inventory-Short Form), and demographic data were also collected. Results from a total of 415 residents monitored with the SenseWear® activity armbands, 192 met the valid wear-time of 21 h or more, and had activity and sleep data recorded. These residents were largely inactive during the daytime (engaged in an average of 1.8 h of light physical activity), but achieved recommended amounts of sleep at night (average of 6.8 h). There was considerable variation within the sample, and activity and sleep differed by sex (p 

AIMS AND OBJECTIVES: to evaluate the effect of an educational programme on registered nurses' knowledge and attitude in delirium care for hospitalised older adults with and without dementia, and to examine the strengths and weaknesses of the programme from the participants' perspectives. BACKGROUND: Providing care for patients with delirium or delirium superimposed on dementia often poses particular challenges such as distinguishing between delirium and dementia for nurses. DESIGN: a descriptive qualitative study was used. METHODS: a delirium educational programme based on adult learning principles was provided to the participants. A purposive sample of 12 registered nurses who participated in the educational programme undertook individual interviews. Content analysis was conducted to identify unique and common themes indicative of registered nurse perceptions. RESULTS: Registered nurses reported improved knowledge and attitude towards the delirium care of hospitalised older adults with dementia and at risk of delirium. Active learning in the programme facilitated the participants' learning processes. This active learning included deep learning, collaborative learning and application of new concepts to practice. Most participants felt that they had inadequate management support to apply their new knowledge in practice, and this included staff resource and policies and protocols. CONCLUSION: the qualitative findings indicated that the delirium education had benefited the participants by improving their knowledge and attitude towards the delirium care of hospitalised older adults with dementia and at risk of delirium. This study provided an understanding of the strengths and limitations of the educational programme delivered to registered nurses in South Korea. RELEVANCE TO CLINICAL PRACTICE: Registered nurses in South Korea should need not only appropriate education, but also adequate resources, policies and guidelines as well as support from managers and from all other healthcare professionals.

OBJECTIVE: to undertake an integrative review of the literature on relationships between community aged care recipients, family carers and care providers under consumer-directed care (CDC). METHODS: Seven databases were systematically searched. Peer-reviewed and grey literature on CDC between 1998 and 2014 were assessed using an integrative literature review (ILR) framework. Search terms included CDC, self-directed care, direct payments, community aged care, community dwelling and older adults. Full-text copies were assessed against the inclusion criteria. RESULTS: Fifteen studies met the inclusion criteria. This ILR found no research with a specific focus on caregiving relationships for older adults. The literature did however identify relational issues such as support, planning and provider attitude as fundamental to the success of CDC. CONCLUSION: Relationships within the caregiving triad have important implications for the way CDC is enacted, particularly when the care recipient has dementia, suggesting this population as a priority for future research.

© 2017 AMDA – the Society for Post-Acute and Long-Term Care Medicine Objectives to test the effects of individual, nonfacilitated sessions with PARO (version 9), when compared against a look-alike plush toy and usual care, on the emotional and behavioral symptoms of dementia for people living in long-term care facilities. Design Parallel, 3-group, cluster-randomized controlled trial conducted between June 14, 2014, and May 16, 2015. Setting Twenty-eight long-term care facilities operated by 20 care organizations located in South-East Queensland, Australia. Participants Four hundred fifteen participants aged ≥60 years, with a documented diagnosis of dementia. Intervention Stratified by private/not-for-profit status and randomized using a computer-generated sequence, 9 facilities were randomized to the PARO group (individual, nonfacilitated, 15-minute sessions 3 times per week for 10 weeks); 10 to plush toy (same, but given PARO with robotic features disabled); and 9 to usual care. Treatment allocation was masked to assessors. Measurements Primary outcomes were changes in levels of engagement, mood states, and agitation after a 10-week intervention, assessed by coded video observations (baseline, weeks 1, 5, 10, and 15) and Cohen-Mansfield Agitation Inventory–Short Form (baseline, weeks 10 and 15). Analyses followed intention-to-treat, using repeated measures mixed effects models. Australian New Zealand Clinical Trials Registry (ACTRN12614000508673). Results Video data showed that participants in the PARO group were more verbally [3.61, 95% confidence interval (CI): 6.40–0.81, P =.011] and visually engaged (13.06, 95% CI: 17.05–9.06, P

The objective of this pilot study was to gather preliminary evidence on suicidal ideation in family carers of people with dementia. An online, cross-sectional survey was conducted with 120 family carers, the majority of whom were located in Australia and USA. The survey included measures of suicidality, self-efficacy, physical health, depression, hopelessness, anxiety, optimism, caregiver burden, coping strategies and social support. Twenty-six percent of carers had contemplated suicide more than once in the previous year. Only half of these had ever told someone they might commit suicide and almost 30% said they were likely to attempt suicide in the future. Carers who had contemplated suicide had poorer mental health, lower self-efficacy for community support service use and greater use of dysfunctional coping strategies than those who had not. In a logistic regression, only depression predicted the presence of suicidal thoughts. A significant number of people might contemplate suicide while caring for a family member with dementia. Although more research is required to confirm this finding, there are clear implications for policy and clinical practice in terms of identifying and supporting carers who are already contemplating suicide. Copyright © 2013 John Wiley & Sons, Ltd.