Minimum clinically important difference of the Social Functioning in Dementia Scale (SF-DEM)

Objectives: Good social functioning is important for people living with dementia and their families. The Social Functioning in Dementia Scale (SF-DEM) is a valid and reliable instrument measuring social functioning in dementia. However the minimum clinically important difference (MCID) has not yet been derived for SF-DEM. This study aims to define the MCID for the SF-DEM. // Design: We used triangulation, incorporating data from a cross-sectional study to calculate the MCID using distribution-based and anchor-based methods, and a Delphi survey. // Setting and participants: The cross-sectional survey comprised 299 family carers of people with dementia. Twenty dementia experts (researchers, clinicians, family carers) rated whether changes on clinical vignettes represented a meaningful change in the Delphi survey. // Primary outcome measures: We calculated the distribution-based MCID as 0.5 of an SD for each of the three SF-DEM domains (1—spending time with others, 2—communicating with others, 3—sensitivity to others). We used the carers’ rating of social functioning to calculate the anchor-based MCID. For the Delphi survey, we defined consensus as ≥75% agreement. Where there was lack of consensus, experts were asked to complete a further survey round. // Results: We found that 0.5 SD of SF-DEM was 1.9 points, 2.2 and 1.4 points in domains 1, 2 and 3, respectively. Using the anchoring analysis, the MCIDs were 1.7 points, 1.7 points, and 0.9 points in domains 1, 2 and 3, respectively. The Delphi method required two rounds. In the second round, a consensus was reached that a 2-point change was considered significant in all three domains, but no consensus was reached on a 1-point change. // Conclusions: By triangulating all three methods, the SF-DEM’s MCIDs were 1.9, 2.0 and 1.4 points for domains 1, 2 and 3, respectively. For individuals, these values should be rounded to a 2-point change for each domain

The influence of social contact on risk of dementia

Background: There is need for identification of modifiable risk factors for dementia as intervention targets. Social network contact may reduce dementia risk through building cognitive reserve, but previous observational study findings are susceptible to reverse causation bias due to short follow-up. Aim: To examine the influence of social contact on incident dementia. Methods: I conducted a systematic review and meta-analysis of the association of marital status, used as a proxy measure for cumulative lifetime social contact, and dementia. I next examined the accuracy of English routinely-collected hospital data on dementia diagnosis to establish the validity of using these records to ascertain dementia status. I then used the Whitehall II prospective cohort study to examine the association of social contact frequency and incident dementia, ascertained from routinely-collected databases. Results: The pooled relative risk of dementia for people who were single or widowed, compared to married, was 1.42 (1.07, 1.90) and 1.20 (1.02, 1.41) respectively, an association which persisted after adjustment for potential confounding variables. I found that routinely collected hospital data included, during 2.5 mean years of follow-up, records of dementia for 78% of people with “gold-standard” dementia diagnosis; diagnostic recording was less likely for single people than married (odds ratio = 0.81 (0.67, 0.99). I found that more frequent social contact at age 60 years was associated with lower risk of dementia (hazard ratio = 0.88 (0.79, 0.98)) but risk for social contact at 50 or 70 years was similar but not significantly associated. More frequent social contact during mid-life was associated with higher baseline cognition, but not subsequent rate of cognitive decline. Conclusions: More frequent social contact is likely to be associated with lower risk of subsequent dementia. This may be because social contact builds greater cognitive reserve, thereby delaying dementia onset, or that social contact is a marker of those with higher cognitive reserve

Socially assistive robots for people with dementia: systematic review and meta-analysis of feasibility, acceptability and the effect on cognition, neuropsychiatric symptoms and quality of life

BACKGROUND: There is increasing interest in using robots to support dementia care but little consensus on the evidence for their use. The aim of the study is to review evidence about feasibility, acceptability and clinical effectiveness of socially assistive robots used for people with dementia. METHOD: We conducted a systematic review and meta-analysis. We searched MEDLINE, EMBASE, PsychINFO, CINHAL, IEEE Xplore Digital Library, and EI Engineering Village from inception to 04 -02-2022 - included primary studies assessing feasibility, acceptability, or effectiveness of socially assistive robots for people with dementia. Two independent reviewers screened studies for eligibility, and assessed quality. Narrative synthesis prioritized higher quality studies, and random-effect meta-analyses compared robots with usual care (UC) or active control (AC) immediately after the intervention (short-term; ST) or long-term (LT) on cognition, neuropsychiatric symptoms, and quality of life. FINDINGS: 66 studies and four categories of robots were eligible: Companion robots (Pet and humanoid companion robots), telepresence communication robots, homecare assistive robots and multifunctional robots. PARO (companion robot seal) was feasible and acceptable but limited by its weight, cost, and sound. On meta-analysis, PARO had no ST or LT compared to UC or AC over 5-12 weeks on agitation (ST vs UC, 4 trials, 153 participants: pooled standardized mean difference (SMD) 0.25; -0.57 to 0.06; LT vs UC; 2 trials, 77 participants, SMD =-0.24; -0.94, 0.46), cognition (ST vs UC, 3 trials, 128 participants: SMD= 0.03; -0.32, 0.38), overall neuropsychiatric symptoms (ST vs UC, 3 trials, 169 participants: SMD= -0.01; -0.32, 0.29; ST vs AC, 2 trials, 145 participants: SMD =0.02, -0.71, 0.85), apathy (ST vs AC, 2 trials, 81 participants: SMD= 0.14; 0.29, 0.58), depression (ST vs UC, 4 trials, 181 participants; SMD= 0.08; -0.52, 0.69; LT vs UC: 2 trials, 77 participants: SMD =0.01; -0.75, 0.77), anxiety (ST vs UC: 2 trials, 104 participants, SMD= 0.24; -0.85, 1.33) and quality of life (ST vs UC, 2 trials, 127 participants: SMD=-0.05; -0.52, 0.42; ST vs AC: 2 trials, 159 participants, SMD =-0.36, -0.76, 0.05). Robotic animals, humanoid companion robots, telepresence robots and multifunctional robots were feasible and acceptable. However, humanoid companion robots have speech recognition problems, and telepresence robots and multifunctional robots were often difficult to use. There was mixed evidence about the feasibility of homecare robots. There was little evidence on any of these robots' effectiveness. CONCLUSION: Although robots were generally feasible and acceptable, there is no clear evidence that people with dementia derive benefit from robots for cognition, neuropsychiatric symptoms, or quality of life. We recommend that future research should use high quality designs to establish evidence of effectiveness

Apathy in UK Care Home Residents with Dementia: Longitudinal Course and Determinants

Background: Apathy in dementia is common and associated with worse disease outcomes. // Objective: To describe the longitudinal course of apathy in dementia and identify associated sociodemographic and disease-related factors. // Methods: Prospective cohort study of UK care home residents with dementia. At baseline, 4, 8, 12, and 16 months, care home staff rated apathy using the Neuropsychiatric Inventory (clinically-significant apathy if≥4), dementia severity, and provided other sociodemographic information about each participant. We examined the prevalence and persistence of apathy and, in mixed linear models, its association with time, age, sex, dementia severity, antipsychotic use, and baseline apathy and other neuropsychiatric symptoms. // Results: Of 1,419 included participants (mean age 85 years (SD 8.5)), 30% had mild dementia, 33% moderate, and 37% severe. The point prevalence of clinically-significant apathy was 21.4% (n = 304) and the 16-month period prevalence was 47.3% (n = 671). Of participants with follow-up data, 45 (3.8%) were always clinically-significantly apathetic, 3 (0.3%) were always sub-clinically apathetic, and 420 (36.2%) were never apathetic until death or end of follow-up. In adjusted models, apathy increased over time and was associated with having more severe dementia, worse baseline apathy and other neuropsychiatric symptoms. // Conclusion: It is important for clinicians to know that most people with dementia are not apathetic, though it is common. Most of those with significant symptoms of apathy improve without specific treatments, although some also relapse, meaning that intervention may not be needed. Future research should seek to target those people with persistent severe apathy and test treatments in this group

Equity in care and support provision for people affected by dementia: experiences of people from UK South Asian and White British backgrounds

OBJECTIVES: To explore the care and support received and wanted by United Kingdom (UK) South Asian and White British people affected by dementia and whether access to it is equitable. DESIGN: Semi-structured interviews using a topic guide. SETTING: Eight memory clinics across four UK National Health Service Trusts; three in London and one in Leicester. PARTICIPANTS: We purposefully recruited a maximum variation sample of people living with dementia from South Asian or White British backgrounds, their family carers, and memory clinic clinicians. We interviewed 62 participants including 13 people living with dementia, 24 family carers, and 25 clinicians. MEASUREMENTS: We audio-recorded interviews, transcribed them, and analyzed them using reflexive thematic analysis. RESULTS: People from either background were willing to accept needed care and wanted competence and communication from carers. South Asian people frequently discussed needing care from someone with a shared language, but language differences could also be an issue for White British people. Some clinicians thought South Asian people had a stronger preference to provide care within the family. We found that preferences for who provides care varied across families regardless of ethnicity. Those with more financial resources and English language have more options for care that meets their needs. CONCLUSIONS: People of the same background make differing choices about care. Equitable access to care is impacted by people’s personal resources, and people from South Asian backgrounds may experience the double disadvantage of having fewer options for care that meets their needs and fewer resources to seek care elsewhere

Psychiatric disorders and risk of subsequent dementia: Systematic review and meta-analysis of longitudinal studies

OBJECTIVES: Although psychiatric disorders have been found to be associated with increased risk of dementia, previous findings are mixed, and the nature of these relationships remains poorly understood. We examined longitudinal associations between depression, anxiety, post-traumatic stress disorders (PTSD), bipolar disorder (BPD), psychotic disorders and subsequent dementia. METHODS: We searched three databases for longitudinal, population-based studies investigating associations between psychiatric disorders and dementia (PROSPERO registration: CRD42020209638). We conducted narrative synthesis, and random-effects meta-analyses to obtain pooled estimates. We used meta-regression and stratified analyses to examine variation by sex, age-at-onset and follow-up time. RESULTS: Fifty-seven citations met eligibility criteria. Most studies focussed on depression (n = 33), which was associated with subsequent all-cause dementia (pooled relative risk [RR]: 1.96, 95% confidence interval [CI]: 1.59-2.43; I2  = 96.5%), Alzheimer's Disease (pooled RR: 1.9, 95% CI: 1.52-2.38; I2  = 85.5%), and Vascular Dementia (pooled RR: 2.71, 95% CI: 2.48-2.97; I2  = 0). Associations were stronger in studies with shorter follow-up periods and for severe and late-onset depression. Findings regarding anxiety were mixed, and we did not find evidence of an overall association (pooled RR: 1.18, 95% CI: 0.96-1.45; I2  = 52.2%, n = 5). Despite sparse evidence, psychotic disorders (pooled RR: 2.19, 95% CI: 1.44-3.31; I2  = 99%), PTSD and BPD were associated with subsequent dementia. CONCLUSIONS: People with psychiatric disorders represent high-risk groups for dementia, highlighting the importance of ongoing symptom monitoring in these groups. Findings regarding temporality and age-at-onset indicate that depression symptoms could reflect prodromal dementia for some individuals. Further longitudinal research is required to determine whether psychiatric disorders represent causal risk factors or early markers of dementia neuropathology

Comparison of sex differences in cognitive function in older adults between high- and middle-income countries and the role of education: a population-based multicohort study

BACKGROUND: The extent to which education explains variations in sex differences in cognitive function between countries at different levels of economic development is unknown. We examined the role of education in sex differences in four cognitive domains in high- and middle-income countries. METHODS: Analyses were based on 70,846 participants, aged 60 years and older, in cohort studies from a high-income (United States) and four middle-income countries (Mexico, Brazil, China, and India). We used weighted linear models to allow nationally-representative comparisons of sex differences in orientation, memory, attention, and fluency using the United States as the reference, before and after adjustment for education, and after stratification by education. RESULTS: Females had lower levels of education than males in all countries, particularly in India. Before adjustment for education, sex differences in orientation and attention in all middle-income countries, memory in Brazil, China, and India, and fluency in India were less favourable to females than in the United States (P < 0.010). For example, females outperformed males in memory in the United States (mean difference [male-female scores] = -0.26 standard deviations [95% CI -0.30, -0.22]) but not in China (0.15 [0.09, 0.21]) or India (0.16 [0.13, 0.19]). Adjustment for education attenuated these sex differences. In analyses stratified by education, there were minimal sex differences in the high education group in all countries. CONCLUSION: Education contributes to larger female disadvantages in cognitive function at older ages in middle-income countries compared with the United States. Gender equity in education is an important target to reduce sex disparities in cognitive function globally

A qualitative study of online mental health information seeking behaviour by those with psychosis.

BACKGROUND: The Internet and mobile technology are changing the way people learn about and manage their illnesses. Little is known about online mental health information seeking behaviour by people with psychosis. This paper explores the nature, extent and consequences of online mental health information seeking behaviour by people with psychosis and investigates the acceptability of a mobile mental health application (app). METHODS: Semi-structured interviews were carried out with people with psychosis (n = 22). Participants were purposively recruited through secondary care settings in London. The main topics discussed were participants' current and historical use of online mental health information and technology. Interviews were audio-recorded, transcribed and analysed by a team of researchers using thematic analysis. RESULTS: Mental health related Internet use was widespread. Eighteen people described searching the Internet to help them make sense of their psychotic experiences, and to read more information about their diagnosis, their prescribed psychiatric medication and its side-effects. Whilst some participants sought 'expert' online information from mental health clinicians and research journals, others described actively seeking first person perspectives. Eight participants used this information collaboratively with clinicians and spoke of the empowerment and independence the Internet offered them. However nine participants did not discuss their use of online mental health information with their clinicians for a number of reasons, including fear of undermining their clinician's authority. For some of these people concerns over what they had read led them to discontinue their antipsychotic medication without discussion with their mental health team. CONCLUSIONS: People with psychosis use the Internet to acquire mental health related information. This can be a helpful source of supplementary information particularly for those who use it collaboratively with clinicians. When this information is not shared with their mental health team, it can affect patients' health care decisions. A partnership approach to online health-information seeking is needed, with mental health clinicians encouraging patients to discuss information they have found online as part of a shared decision-making process. Our research suggests that those with psychosis have active digital lives and that the introduction of a mental health app into services would potentially be well received

The social functioning in dementia scale (SF-DEM): exploratory factor analysis and psychometric properties in mild, moderate, and severe dementia

Introduction: The psychometric properties of the social functioning in dementia scale over different dementia severities are unknown. Methods: We interviewed 299 family carers of people with mild, moderate, or severe dementia from two UK research sites; examined acceptability (completion rates); conducted exploratory factor analysis; and tested each factor's internal consistency and construct validity. Results: Of 299, 285 (95.3%) carers completed questionnaires. Factor analysis indicated three distinct factors with acceptable internal consistency: spending time with other people, correlating with overall social function (r = 0.56, P <.001) and activities of daily living (r = −0.48, P <.001); communicating with other people correlating with activities of daily living (r = −0.66, P <.001); and sensitivity to other people correlating with quality of life (r = 0.35, P <.001) and inversely with neuropsychiatric symptoms (r = −0.45, P <.001). The three factors' correlations with other domains were similar across all dementia severities. Discussion: The social functioning in dementia scale carer version measures three social functioning domains and has satisfactory psychometric properties in all severities of dementia

Recording of intellectual disability in general hospitals in England 2006-2019: Cohort study using linked datasets

BACKGROUND: Accurate recognition and recording of intellectual disability in those who are admitted to general hospitals is necessary for making reasonable adjustments, ensuring equitable access, and monitoring quality of care. In this study, we determined the rate of recording of intellectual disability in those with the condition who were admitted to hospital and factors associated with the condition being unrecorded. METHODS AND FINDINGS: Retrospective cohort study using 2 linked datasets of routinely collected clinical data in England. We identified adults with diagnosed intellectual disability in a large secondary mental healthcare database and used general hospital records to investigate recording of intellectual disability when people were admitted to general hospitals between 2006 and 2019. Trends over time and factors associated with intellectual disability being unrecorded were investigated. We obtained data on 2,477 adults with intellectual disability who were admitted to a general hospital in England at least once during the study period (total number of admissions = 27,314; median number of admissions = 5). People with intellectual disability were accurately recorded as having the condition during 2.9% (95% CI 2.7% to 3.1%) of their admissions. Broadening the criteria to include a nonspecific code of learning difficulty increased recording to 27.7% (95% CI 27.2% to 28.3%) of all admissions. In analyses adjusted for age, sex, ethnicity, and socioeconomic deprivation, having a mild intellectual disability and being married were associated with increased odds of the intellectual disability being unrecorded in hospital records. We had no measure of quality of hospital care received and could not relate this to the presence or absence of a record of intellectual disability in the patient record. CONCLUSIONS: Recognition and recording of intellectual disability in adults admitted to English general hospitals needs to be improved. Staff awareness training, screening at the point of admission, and data sharing between health and social care services could improve care for people with intellectual disability