Unpaid carers' experiences of supporting people with dementia to use social media.

Objectives: The aim of this study was to explore unpaid carers' experiences of supporting people with dementia to use social media.Methods: Unpaid carers (n = 234) responded to an online survey about their attitudes towards people with dementia using social media and any experiences supporting this usage. Responses to closed questions were analysed using frequency analysis; qualitative data were analysed thematically.Results: Fifty-five carers (23.5%) cared for someone with dementia who used social media. Thematic analysis produced four themes: (1) carers as social media navigators; (2) social media supports care; (3) carers as social media guardians; and (4) labour-intensive work. Carers valued the social connectivity and stimulation social media provided but remained vigilant about online safety. They carefully managed the online experiences of people with dementia, balancing perceived benefits with safety, security, and caring demands.Conclusions: These findings shed light on the complexities of caring in the digital age. Many carers are supporting people with dementia in using social media, but there is little guidance on how best to do this. As older adults continue to embrace social media, carers, support organisations, and policymakers must adapt and work with technology developers to ensure safe and supportive online experiences.

Healthcare utilisation, physical activity and mental health during COVID-19 lockdown: an interrupted time-series analysis of older adults in England.

COVID-19 measures which reduce interpersonal contact may be effective in containing the transmission, but their impacts on peoples' well-being and daily lives overtime remain unclear. Older adults are more vulnerable to both the virus and social isolation. It is therefore imperative to understand how they were affected during this period. Major concerns arising from the pandemic cover the aspects of mental health, healthcare utilisation and individual behavioural changes. Complementing the existing before-and-after analyses, we explore the impacts of easing and re-introducing COVID-19 measures by using a time-series data in England. The data was collected between May and November 2020 from the monthly surveys of the Platform for Research Online to Investigate Genetics and Cognition in Aging (PROTECT). Chi-squared analysis and interrupted time-series analysis were conducted to examine impacts of easing and re-introducing COVID-19 measures. Overall, mental health improves overtime but at a decreasing rate. The use of telephone/video consultations with a doctor or health professional presented a decreasing trend during the pandemic, whilst that of in-person consultation was increasing overtime. We observed significant variations in the time trends of mental health measures, healthcare utilisation and physical activity following the ease but not the re-introduction of COVID-19 measures. Future research is required to understand if these asymmetric impacts were driven by adaption of the people or stringency of the measures. Supplementary Information: The online version contains supplementary material available at 10.1007/s10433-022-00741-y.

The role of self-reported stressors in recovery from Exhaustion Disorder: a longitudinal study.

BACKGROUND: Exhaustion disorder (ED) is a stress-induced disorder characterized by physical and mental symptoms of exhaustion that can be long-lasting. Although stress exposure is essential for the development of ED, little is known regarding the role of stressors in the maintenance of ED. The aim of the study was to investigate the role of work-related stressors, private-related stressors, and adverse childhood experiences in long-term recovery from ED. METHODS: A mixed methods design was used. The design was sequential, and data analysis was performed in two parts, where the first part consisted of qualitative analysis of patient records, and the second part consisted of statistical analysis of the data retrieved from the qualitative coding. Patient records from 150 patients with ED was analysed regarding work-related stressors, private-related stressors, and adverse childhood experiences. For each patient, two patient records were analysed, one from the time of diagnosis (baseline) and one from the follow-up clinical assessment, 7-12 years after diagnosis (follow-up). Out of the 150 patients, 51 individuals still fulfilled the diagnostic criteria for ED at follow-up (ED group) and 99 individuals no longer fulfilled the diagnostic criteria and were thus considered recovered (EDrec). Percentages in each group (ED and EDrec) reporting each stressor at baseline and follow-up were calculated as well as the differences in percentage points between the groups along with the 95% confidence intervals for the differences. RESULTS: At baseline, significantly more EDrec patients reported quantitative demands (73% EDrec, 53% ED) and managerial responsibilities (14% EDrec, 2% ED). Private-related stressors did not differ at baseline. At follow-up, significantly more ED patients reported managerial responsibilities (8 ED, 0% EDrec) and caregiver stress (child) (24% ED, 6% EDrec) and significantly more EDrec patients reported caregiver stress (parent) (6% EDrec, 0% ED). There were no differences regarding adverse childhood experiences. CONCLUSIONS: The main conclusion is that neither adverse childhood experiences nor any of the stressors at baseline are associated with long-term ED. Ongoing stressors related to having responsibility for other people, such as managerial responsibilities or caring for a child with a chronic disease or psychiatric disorder, may be associated with long-term exhaustion.

Using Twitter to understand perspectives and experiences of dementia and caregiving at the beginning of the COVID-19 pandemic.

The COVID-19 pandemic has placed a tremendous burden on all of society, particularly among vulnerable populations such as people living with dementia and their caregivers. Efforts to understand the impact of the COVID-19 pandemic on those living with dementia are crucial towards addressing needs during the pandemic and beyond. This qualitative descriptive study includes a thematic analysis of 6938 tweets from March 17-24, 2020, that included direct or indirect references to COVID-19 and at least one of the following terms/hashtags: Alzheimer, #Alzheimer, dementia, and #dementia. Five themes were identified: continuing care, finding support, preventing spread of COVID-19, maintaining human rights, and the impact of the pandemic on the daily lives of people living with dementia. People living with dementia and their families faced unique challenges related to caregiving, maintaining social connectedness while trying to follow public health guidelines, and navigating the convergence of COVID-19 and dementia-related stigma. Data from Twitter can be an effective means to understand the impacts of public health emergencies among those living with dementia and how to address their needs moving forward by highlighting gaps in practice, services, and research.

What Works in Violence Prevention Among Young People?: A Systematic Review of Reviews.

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.

Healthcare utilisation and physical activities for older adults with comorbidities in the UK during COVID-19.

A major concern with COVID-19 was the impact it would have on individual health, the routine use of healthcare services, and physical activities, especially for older adults with comorbidities. To address this, we studied the association between these variables for older adults during the pandemic. To explore what policy instruments might be effective in mitigating the negative impacts, we investigated the effects of a shielding notice for those identified as vulnerable by the government and social media given it has been an important source for disseminating information of COVID-19. We employed a UK sample with 3,807 participants aged ≥50 from an online survey administered during May and June 2020. Based on numbers of comorbidities, we separated the sample into a higher comorbidity group with those in the upper quartile of the sample (n = 829) and a lower comorbidity group with the remainder (n = 2,978). Statistical methods include chi-squared analyses and cross-sectional regressions. We found that individuals with higher comorbidities were more likely to have poorer self-reported health and mental health and to receive a shielding notice from the government compared to those without (p < 0.05). Decreases in physical activities were associated with poorer self-reported health and the increases were associated with better self-reported health; on the other hand, the decreases were associated with poorer mental health, but the increases did not link to better mental health. Examination of the effects of policy instruments shows that a shielding notice was positively associated with primary care use. The notice generated greater reliance on telephone/video consultations compared to in-person consultations, but the impacts were less strong for people with higher comorbidities. Frequent use of social media raised the probability of increasing physical activities and reduced that of decreasing physical activities, implying social media being an effective tool in promoting physical activities during the lockdown and subsequent restrictions.

Suicidality in family caregivers of people with long-term illnesses and disabilities: A scoping review.

An emerging body of international research suggests family caregivers may be a high-risk group for suicide, but the evidence has not been synthesised. Forty-eight peer-reviewed journal articles were included in this review, spanning low-, middle-, and high-income countries and a variety of illnesses and disabilities. The proportion of caregivers experiencing suicidal ideation ranged from 2.7% to 71%, with evidence of suicide attempts, deaths by suicide, and deaths by homicide-suicide also reported. Risk and protective factors varied across studies and there was little consideration of differences by caregiving relationship, type of illness/disability, or country. There is sufficient evidence to warrant concern for caregivers around the world and prompt action in policy and practice, but more rigorous research is required to draw clear, nuanced conclusions about risk and inform evidence-based prevention and intervention.

The use of Twitter by people with young-onset dementia: A qualitative analysis of narratives and identity formation in the age of social media.

A diagnosis of dementia in midlife can be challenging, causing losses or changes in a person's identity. Narrative provides a means of reconstructing identity and can be communicated on social media. There has been initial evidence on the value of Twitter for people with dementia, but researchers have not yet directly engaged with users' perspectives. We employed a narrative model of identity to examine why people with dementia use Twitter and what challenges they face. Interviews were conducted with 11 younger people with dementia and analysed thematically. Participants used Twitter to counter a loss of identity through community membership and by regaining a sense of purpose. They sought to redefine dementia identities by challenging stigma and campaigning for social change. The character limit of tweets facilitated narrative through which participants preserved their identities. These findings suggest that Twitter could be an important source of post-diagnostic support for people with young-onset dementia. However, there are some risks as Twitter was sometimes a hostile environment for individuals who did not present in a 'typical' manner, or faced technical difficulties because of their symptoms. In the future, platform developers could work with people with dementia to make Twitter more accessible for this group.

The involvement of people with dementia in advocacy: a systematic narrative review.

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.

Loneliness, physical activity, and mental health during COVID-19: a longitudinal analysis of depression and anxiety in adults over the age of 50 between 2015 and 2020.

OBJECTIVE: Loneliness and physical activity are important targets for research into the impact of COVID-19 because they have established links with mental health, could be exacerbated by social distancing policies, and are potentially modifiable. In this study, we aimed to identify whether loneliness and physical activity were associated with worse mental health during a period of mandatory social distancing in the UK. DESIGN: Population-based observational cohort study. SETTING: Mental health data collected online during COVID-19 from an existing sample of adults aged 50 and over taking part in a longitudinal study of aging. All had comparable annual data collected between 2015 and 2019. PARTICIPANTS: Three-thousand two-hundred and eighty-one participants aged 50 and over. MEASUREMENTS: Trajectories of depression (measured by PHQ-9) and anxiety (measured by GAD-7) between 2015 and 2020 were analyzed with respect to loneliness, physical activity levels, and a number of socioeconomic and demographic characteristics using zero-inflated negative binomial regression. RESULTS: In 2020, PHQ-9 score for loneliness, adjusted for covariates, was 3.23 (95% CI: 3.01-3.44), an increase of around 1 point on all previous years in this group and 2 points higher than people not rated lonely, whose score did not change in 2020 (1.22, 95% CI: 1.12-1.32). PHQ-9 was 2.60 (95% CI: 2.43-2.78) in people with decreased physical activity, an increase of .5 on previous years. In contrast, PHQ-9 in 2020 for people whose physical activity had not decreased was 1.66, 95% CI: 1.56-1.75, similar to previous years. A similar relationship was observed for GAD-7 though the absolute burden of symptoms lower. CONCLUSION: After accounting for pre-COVID-19 trends, we show that experiencing loneliness and decreased physical activity are risk factors for worsening mental health during the pandemic. Our findings highlight the need to examine policies which target these potentially modifiable risk factors.

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.

Research Commentary: A Carer's Roadmap for Research, Practice, and Policy on Suicide, Homicide, and Self-Harm.

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.

"Like Death is Near": Expressions of Suicidal and Homicidal Ideation in the Blog Posts of Family Caregivers of People with Dementia.

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.

Effect of a robotic seal on the motor activity and sleep patterns of older people with dementia, as measured by wearable technology: A cluster-randomised controlled trial.

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).

The Cost-Effectiveness of Using PARO, a Therapeutic Robotic Seal, to Reduce Agitation and Medication Use in Dementia: Findings from a Cluster-Randomized Controlled Trial.

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.

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. © 2017 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd.

Use of a Robotic Seal as a Therapeutic Tool to Improve Dementia Symptoms: A Cluster-Randomized Controlled Trial.

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 < .0001) than participants in plush toy. Both PARO (-3.09, 95% CI: -0.45 to -5.72, P = .022) and plush toy (-3.58, 95% CI: -1.26 to -5.91, P = .002) had significantly greater reduced neutral affect compared with usual care, whilst PARO was more effective than usual care in improving pleasure (1.12, 95% CI: 1.94-0.29, P = .008). Videos showed that PARO was more effective than usual care in improving agitation (3.33, 95% CI: 5.79-0.86, P = .008). When measured using the CMAI-SF, there was no difference between groups. CONCLUSIONS: Although more effective than usual care in improving mood states and agitation, PARO was only more effective than a plush toy in encouraging engagement.

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.