The narratives of people with dementia have traditionally been underrepresented in research, policy, and public life. The social networking site Twitter has the potential to affect the lived experiences of people with dementia and facilitate their social inclusion, but research is limited. The overarching aim of this thesis was to explore how and why people with dementia use Twitter. Study One was a content analysis of the profile descriptions of account holders who identified themselves as having dementia. The aims were to identify how many Twitter account holders identified themselves as having dementia, and to examine their characteristics. Study Two was a thematic analysis of the tweets of people with dementia. The aims were to explore how they used Twitter and to examine the illness narratives they created and promoted online. Study Three comprised thematic and longitudinal analyses of case studies of people with dementia. The aims were to examine, in their own words, how and why people with dementia used Twitter, and to explore how this changed over time. The findings of this thesis showed that people with dementia used Twitter to present themselves and their diagnosis in a positive manner. People with dementia used Twitter to have a voice on the issues that affect them, create social change, educate others, establish new social connections, expand existing offline social networks, access peer support, document experiences, communicate, and enhance feelings of self-worth. While the use of Twitter by people with dementia was largely positive, they also experienced technical difficulties, were vulnerable to online abuse, and found the platform increasingly difficult to use as the symptoms of dementia progressed. At present, Twitter might only be appropriate for people in the earlier stages of dementia. In the future, researchers could work with platform developers to make Twitter more dementia-friendly, develop guidelines for people with dementia on how to use and be safe on Twitter, and use longer timeframes to further examine how the use of Twitter by people with dementia changes as symptoms progress.

© 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.

Objectives This Prospero-registered review sought to answer three questions concerning people with dementia involved in speaking out on behalf of themselves and others as dementia advocates. First, what are the views and motivations of the people involved? Second, what impact does this have upon them and others? Third, what are the future policy and research implications?Methods: a systematic search and narrative synthesis of original research was conducted. Searches in Pubmed, Web of Science, PsychINFO and CINAHL followed PRISMA Guidelines. The review focused on people with dementia involved in advocacy. There were no restrictions based on study design or date. Language was limited to English.Results: Seven papers were identified, with predominantly qualitative methodologies. Four overarching themes were identified: threats, fighting back, evolving identities and making a difference. Threats ranged from those arising from dementia as an illness, to exposure to stigma. Fighting back represented advocates' response to these threats, often described using martial metaphors. Evolving identities captured advocates' journeys through diagnosis to involvement in advocacy and subsequent impact upon identity. Making a difference represented the impact of dementia advocacy at an individual, community and societal level.Conclusions: This review confirms that the threats associated with dementia extend beyond the symptoms of illness. Dementia advocacy offers potential improvements in well-being for those involved, through the activity itself and via extended social networks. There is little research on broader aspects of advocates' identity, including ethnicity, gender, and age. There has been little attempt to quantify the impact of dementia advocacy.

Violence prevention programs aim to raise awareness, change attitudes, normative beliefs, motivation, and behavioral responses. Many programs have been developed and evaluated, and optimistic claims about effectiveness made. Yet comprehensive guidance on program design, implementation, and evaluation is limited. The aim of this study was to provide an up-to-date review of evidence on what works for whom. A systematic search of PsycINFO, MEDLINE, ERIC, and Sociology Collection ProQuest identified 40 reviews and meta-analyses reporting on the effectiveness of violence prevention programs among young people (age 15–30) in educational institutions, published before October 2018. These included reviews of programs designed to reduce (i) bullying, (ii) dating and relationship violence, (iii) sexual assault, and (iv) antisocial behavior. Only evaluations that reported on behavioral outcomes such as perpetration, victimization, and bystander behavior were included. The reviewed evaluations reported on programs that were mainly implemented in high-income countries in Europe and North America. The majority found small effects on violence reduction and victimization and increases in self-reported bystander behavior. Our findings expose critical gaps in evaluation research in this area and provide recommendations on how to optimize the effectiveness of future programs.

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.

Abstract
.
. Background
. Previous research suggests that family caregivers contemplate suicide at a higher rate than the general population. Much of this research has been disease specific and in relatively small samples. This study aimed to compare suicidal thoughts between non-caregivers and informal caregivers of people with a variety of conditions, in a large representative sample, and to identify significant risk factors.
.
.
. Methods
. The general population study NEMESIS-2 (N at baseline = 6646) included 1582 adult caregivers at the second wave (2010–2012) who also participated at the third wave (2013–2015). Suicidal thoughts were assessed over 4 years, with the Suicidality Module of the Composite International Diagnostic Interview 3.0. The presence of suicidal thoughts was estimated and risk factors for suicidal thoughts were assessed with logistic regression analyses adjusted for age and gender.
.
.
. Results
. Thirty-six informal caregivers (2.9%) reported suicidal thoughts during the 4 year study period. The difference between caregivers and non-caregivers (3.0%) was not significant. Among caregivers, significant risk factors for suicidal thoughts included being unemployed, living without a partner, having lower levels of social support, having a chronic physical disorder, a mood disorder or an anxiety disorder, and having impaired social, physical and emotional functioning. These risk factors were also found in non-caregivers. No caregiving-related characteristics were associated with suicidal thoughts.
.
.
. Conclusion
. There was no elevated rate of suicidal thoughts in caregivers and risk factors for suicidal thoughts in caregivers were consistent with risk factors in non-caregivers. No association between caregiving characteristics and suicidal thoughts was found. Caregivers with limited resources and in poorer health might still benefit from prevention and intervention efforts.
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© 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).

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

Yielding is the first in playwright Emma Workman Bolt’s series Let’s Speak of the Unspoken. Informed by my research on suicide risk in family carers, it examines the breaking point in a relationship between an adult daughter and her ageing mother.

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.