How people with dementia use twitter: A qualitative analysis

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

Protocol for Fit Bodies, Fine Minds: a randomized controlled trial on the affect of exercise and cognitive training on cognitive functioning in older adults

Background. Declines in cognitive functioning are a normal part of aging that can affect daily functioning and quality of life. This study will examine the impact of an exercise training program, and a combined exercise and cognitive training program, on the cognitive and physical functioning of older adults. Methods/Design. Fit Bodies, Fine Minds is a randomized, controlled trial. Community-dwelling adults, aged between 65 and 75 years, are randomly allocated to one of three groups for 16 weeks. The exercise-only group do three 60-minute exercise sessions per week. The exercise and cognitive training group do two 60-minute exercise sessions and one 60-minute cognitive training session per week. A no-training control group is contacted every 4 weeks. Measures of cognitive functioning, physical fitness and psychological well-being are taken at baseline (0 weeks), post-test (16 weeks) and 6-month follop (40 weeks). Qualitative responses to the program are taken at post-test. Discussion. With an increasingly aged population, interventions to improve the functioning and quality of life of older adults are particularly important. Exercise training, either alone or in combination with cognitive training, may be an effective means of optimizing cognitive functioning in older adults. This study will add to the growing evidence base on the effectiveness of these interventions. Trial Registration. Australian Clinical Trials Register: ACTRN012607000151437

An educational programme to improve acute care nurses' knowledge, attitudes and family caregiver involvement in care of people with cognitive impairment

Background: The population is ageing in South Korea, increasing the incidence of dementia and delirium. Despite this, registered nurses in South Korea tend to have poor understanding and limited involvement in the assessment of delirium. Aim: To evaluate the effect of an educational programme on acute care nurses’ knowledge, attitudes and the potential for family caregiver involvement in care for older adults with cognitive impairment. Methods: A mixed-methods study that included a single group, pre–post design and individual interviews was used. Forty registered nurses were recruited from four medical wards of one regional general hospital in South Korea. A 3-month educational programme on care for older adults with cognitive impairment tailored to the specific learning needs of nurses and guided by adult learning principles was provided to participants. A purposive sample of 12 registered nurses who participated in the quantitative component, and a nominated sample of six family caregivers whose older family members were cared for by participating nurses, joined individual interviews. Results: The educational programme had a positive impact on nurses’ knowledge of cognitive impairment and attitudes towards older adults. The qualitative data indicated that the educational programme improved nurses’ knowledge of cognitive impairment and their attitudes towards older adults with cognitive impairment. It also increased nurses’ initial efforts to involve family caregivers in cognitive impairment care. Conclusion: Educational programmes are an effective means of improving nurses’ knowledge and attitudes, but more research is required to explore the impact of such a programme on practice change and patient health-related outcomes including incidence of delirium, length of hospital stay and hospital-acquired complications.Griffith Health, School of Nursing and MidwiferyNo Full Tex

In their own words: how family carers of people with dementia understand resilience

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

Risk factors for suicidal thoughts in informal caregivers: Results from the population-based Netherlands mental health survey and incidence Study-2 (NEMESIS-2)

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

Homicidal ideation in family carers of people with dementia

Objective: Family carers of people with dementia have higher than average rates of suicidal ideation, but there has been no research on homicidal ideation in this population. The aim of this study was to explore thoughts of homicide in family carers of people with dementia. Method: A descriptive qualitative approach was taken. Twenty-one Australian carers (7 men, 14 women) participated in individual, in-depth interviews and the transcripts were analysed thematically. Results: Seven themes were identified in the data – active thoughts of homicide; understanding homicidal thoughts in others; passive thoughts of death; euthanasia; homicidal thoughts in other caregiving situations; abuse; and disclosing thoughts of harm. Two of the 21 participants had actively contemplated the homicide of their care recipient, four expressed a passive desire for the care recipient's death, and four reported physically or verbally abusing the care recipient. Only one carer had previously disclosed these experiences. Conclusion: Homicidal ideation is a real and significant phenomenon among family carers of people with dementia. Service providers and health professionals are encouraged to identify and support carers contemplating homicide, but to do so in a way that recognises the broader social context of carer burden

The occurrence and persistence of thoughts of suicide, self-harm and death in family caregivers of people with dementia:a longitudinal data analysis over 2 years

Objective: Family caregivers of people with dementia often report high levels of stress and depression, but little is known about those who contemplate suicide or self-harm. This study explores thoughts of suicide, self-harm and death in dementia caregivers and investigates the characteristics that distinguish them from those without such thoughts. Methods: Data were collected every 3 months, for 24 months, from 192 family caregivers of people with dementia living in the Netherlands. Caregivers did not have a clinical depression or anxiety disorder at baseline. Suicide-related thoughts were measured with an item from the Mini International Neuropsychiatric Interview, a diagnostic instrument for DSM-IV mental disorders. Fisher exact, analysis of variance or Kruskal-Wallis tests compared the characteristics of caregivers who had contemplated suicide with two comparison groups. Results: Within 24 months, 76 caregivers reported symptoms of a potential depression and were further assessed for suicidal thoughts. Nine carers (11.8%, 4.7% of the total sample) reported suicidal thoughts with three of those at multiple points. Caregivers with suicidal thoughts had more severe depressive and anxious symptoms, had a lower sense of competence and mastery, felt less happy and experienced more health problems, less family support and more feelings of loneliness than caregivers who had not. Conclusion: Suicidal thoughts are present in dementia caregivers and can persist across the care trajectory. Various psychological and social characteristics significantly distinguish caregivers with suicidal thoughts from those without. More research is needed to enable the identification of high-risk caregivers and provide an evidence base for the development of preventive strategies and interventions

Writing groups in the digital age: a case study analysis of Shut Up & Write Tuesdays

Social media writing groups are an emerging phenomenon in the academic world. Combining the discipline, mentorship, and peer support of face-to-face writing groups, with the convenience, global reach, and interdisciplinary networks of social media, they offer a way for scholars to apply new digital technologies to the old problem of developing, maintaining, and protecting an academic writing practice. Despite their growing popularity, however, there has been little critical or empirical analysis of these groups. Using Shut Up & Write Tuesdays (SUWT) as a case study, this chapter examines the purpose, use, outcomes, and challenges of a social media writing group for academics. Usage data from the three SUWT Twitter accounts, a survey of SUWT participants, and the narrative reflections of the SUWT hosts, are drawn together to highlight the value, strengths, and limitations of social media writing groups as a scholarly activity in the digital age