Clinical effectiveness of DREAMS START (Dementia Related Manual for Sleep; Strategies for Relatives) versus usual care for people with dementia and their carers: a single-masked, phase 3, parallel-arm, superiority randomised controlled trial.

BACKGROUND: Sleep disturbances are common and distressing for people with dementia and their families. Non-pharmacological interventions should be first-line management, avoiding harmful pharmacological side-effects, but there is none with known effectiveness. We aimed to establish whether DREAMS START, a multicomponent intervention, reduced sleep disturbance in people with dementia living at home compared with usual care. METHODS: We conducted a phase 3, two-arm, multicentre, parallel-arm, superiority randomised controlled trial with masked outcome assessment, recruiting dyads of people with dementia and sleep disturbance and family carers from community settings. Randomisation to the DREAMS START intervention (plus usual treatment) or usual treatment was conducted at dyadic level, blocked, and stratified by site, with a web-based system assigning allocation. DREAMS START is a six-session, manualised intervention delivered face to face or remotely by non-clinically trained graduates over an approximately 3-month period. The primary outcome was sleep disturbance measured by the Sleep Disorders Inventory (SDI) at 8 months. Analyses were on the intention-to-treat population. This trial is registered with ISRCTN 13072268. FINDINGS: Between Feb 24, 2021, and March 5, 2023, 377 dyads were randomly assigned (1:1), 189 to usual treatment and 188 to intervention. The mean age of participants with dementia was 79·4 years (SD 9·0), and 206 (55%) were women. The mean SDI score at 8 months was lower in the intervention group compared with the usual treatment group (15·16 [SD 12·77], n=159, vs 20·34 [16·67], n=163]; adjusted difference in means -4·70 [95% CI -7·65 to -1·74], p=0·002). 17 (9%) people with dementia in the intervention group and 17 (9%) in the control group died during the trial; the deaths were unrelated to the intervention. INTERPRETATION: To our knowledge, DREAMS START is the first multicomponent intervention to improve the sleep of people living at home with dementia more than usual clinical care. It had sustained effectiveness beyond intervention delivery. The intervention's delivery by non-clinically trained graduates increases the potential for implementation within health services, adding to usual clinical care. FUNDING: National Institute for Health and Care Research Health Technology Assessment.

"It's just getting the word out there": Self-disclosure by people with young-onset dementia.

BACKGROUND: Sharing a dementia diagnosis with others is a prerequisite to accessing important support for social, cognitive, and physical activity. However, due to the stigma associated with dementia, individuals may be hesitant to disclose their diagnosis. Despite the importance of this issue, there is limited research on personal experiences with sharing one's diagnosis. This study explored how people with young-onset dementia disclose their diagnosis to other people, also known as self-disclosure, and how time affects self-disclosure. METHODS: We conducted an exploratory qualitative study, using semi-structured interviews with nine people with young-onset dementia living in the United Kingdom (UK). A narrative approach to analysis was applied, focusing on understanding the core narratives, themes, tone, and imagery of each participant's narratives as well as providing a cross-case analysis to identify patterns across narratives. RESULTS: Participants openly disclosed their diagnosis, accepting it as an illness that did not define their identity. Several were met with stigmatizing reactions, which affected their levels of openness, and a lack of understanding, which caused shrinking social networks for some. Peer support groups, advocacy activities, and strategic concealment were used to support self-disclosure. CONCLUSION: This study provides a holistic understanding of people with young-onset dementia's experiences with self-disclosure and how these evolved. Policies should prioritize the creation of dementia-friendly communities, while recommendations for practice include integrating empowerment interventions and peer support into post-diagnostic support. These efforts will support individuals in their self-disclosure journey, promote social engagement and reduce stigma.

Suicide and dementia: A systematic review and meta-analysis of prevalence and risk factors.

Dementia is a global health concern with increasing numbers of people living long enough to develop dementia. People with dementia (PwD) may be particularly vulnerable to suicidality. However, suicide in PwD has not been thoroughly explored. The objective of this review was to determine the prevalence and risk factors of suicide in PwD. Five databases were searched from inception to July 2023. Peer-reviewed publications reporting prevalence, risk factors or quantitative summary data for suicide outcomes in PwD were included. Random effects models were used to calculate the pooled prevalence and effect sizes. 54 studies met inclusion criteria. In PwD, the point prevalence of suicidal ideation was 10 % (95 %CI=6 %;16 %), 2-year period prevalence of suicide attempts was 0.8 % (95 %CI=0.3 %;2 %), 10-year period prevalence of suicide attempts was 8.7 % (95 %CI=6.0 %%;12.7 %) and the incidence of death by suicide 0.1 % (95 %CI=0.1 %;0.2 %). Compared to not having dementia, a diagnosis of dementia increased risk of suicidal ideation (OR=1.62[95 %CI=1.17;2.24]) but not risk of suicide attempt (OR=1.77 [95 %CI=0.85;3.69]) or death by suicide (OR=1.30 [95 %CI=0.81;2.10]). People with moderate dementia had significantly increased risk of suicidal ideation than those with mild dementia (OR=1.59[95 %CI=1.11;2.28]), younger PwD were at increased risk of dying by suicide (OR=2.82[95 %CI=2.16;3.68]) and men with dementia were more likely to attempt (OR=1.28[95 %CI=1.25;1.31]) and die by suicide (OR=2.88[95 %CI=1.54;5.39]) than women with dementia. This review emphasises the need for mental health support and suicide prevention in dementia care, emphasising tailored approaches based on age, symptoms, and being male.

Clinical and cost-effectiveness of DREAMS START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives) for people living with dementia and their carers: a study protocol for a parallel multicentre randomised controlled trial.

INTRODUCTION: Many people living with dementia experience sleep disturbance and there are no known effective treatments. Non-pharmacological treatment options should be the first-line sleep management. For family carers, relatives' sleep disturbance leads to interruption of their sleep, low mood and breakdown of care. Our team developed and delivered DREAMS START (Dementia RElAted Manual for Sleep; STrAtegies for RelaTives), a multimodal non-pharmacological intervention, showing it to be feasible and acceptable. The aim of this randomised controlled trial is to establish whether DREAMS START is clinically cost-effective in reducing sleep disturbances in people living with dementia living at home compared with usual care. METHODS AND ANALYSIS: We will recruit 370 participant dyads (people living with dementia and family carers) from memory services, community mental health teams and the Join Dementia Research Website in England. Those meeting inclusion criteria will be randomised (1:1) either to DREAMS START or to usual treatment. DREAMS START is a six-session (1 hour/session), manualised intervention delivered every 1-2 weeks by supervised, non-clinically trained graduates. Outcomes will be collected at baseline, 4 months and 8 months with the primary outcome being the Sleep Disorders Inventory score at 8 months. Secondary outcomes for the person with dementia (all proxy) include quality of life, daytime sleepiness, neuropsychiatric symptoms and cost-effectiveness. Secondary outcomes for the family carer include quality of life, sleep disturbance, mood, burden and service use and caring/work activity. Analyses will be intention-to-treat and we will conduct a process evaluation. ETHICS AND DISSEMINATION: London-Camden & Kings Cross Ethics Committee (20/LO/0894) approved the study. We will disseminate our findings in high-impact peer-reviewed journals and at national and international conferences. This research has the potential to improve sleep and quality of life for people living with dementia and their carers, in a feasible and scalable intervention. TRIAL REGISTRATION NUMBER: ISRCTN13072268.

Predictors of primary care psychological therapy outcomes for depression and anxiety in people living with dementia: evidence from national healthcare records in England.

BACKGROUND: Psychological therapies can be effective in reducing symptoms of depression and anxiety in people living with dementia (PLWD). However, factors associated with better therapy outcomes in PLWD are currently unknown. AIMS: To investigate whether dementia-specific and non-dementia-specific factors are associated with therapy outcomes in PLWD. METHOD: National linked healthcare records were used to identify 1522 PLWD who attended psychological therapy services across England. Associations between various factors and therapy outcomes were explored. RESULTS: People with frontotemporal dementia were more likely to experience reliable deterioration in depression/anxiety symptoms compared with people with vascular dementia (odds ratio 2.98, 95% CI 1.08-8.22; P = 0.03) or Alzheimer's disease (odds ratio 2.95, 95% CI 1.15-7.55; P = 0.03). Greater depression severity (reliable recovery: odds ratio 0.95, 95% CI 0.92-0.98, P < 0.001; reliable deterioration: odds ratio 1.73, 95% CI 1.04-2.90, P = 0.04), lower work and social functioning (recovery: odds ratio 0.98, 95% CI 0.96-0.99, P = 0.002), psychotropic medication use (recovery: odds ratio 0.67, 95% CI 0.51-0.90, P = 0.01), being of working age (recovery: odds ratio 2.03, 95% CI 1.10-3.73, P = 0.02) and fewer therapy sessions (recovery: odds ratio 1.12, 95% CI 1.09-1.16, P < 0.001) were associated with worse therapy outcomes in PLWD. CONCLUSIONS: Dementia type was generally not associated with outcomes, whereas clinical factors were consistent with those identified for the general population. Additional support and adaptations may be required to improve therapy outcomes in PLWD, particularly in those who are younger and have more severe depression.

Comparing the stigma experiences and comfort with disclosure in Dutch and English populations of people living with dementia.

OBJECTIVES: People living with dementia can feel hesitant disclosing their diagnosis to social networks, partly due to stigma. Little attention has been paid to the measurement of disclosure decisions and stigma, and few standardised stigma tools have been validated in languages other than English. We investigated the psychometric properties of Dutch translations of three stigma measures, and explored the stigma experiences of Dutch and English people living with dementia as well as patterns and predictors of comfort with disclosure. METHODS: Community-dwelling adults living with dementia in the Netherlands (n = 40) and England (n = 40) completed either the English versions or the Dutch translations of the Comfort with Disclosure scale and three stigma measures (Stigma Impact, Stigma Stress, and Secrecy Scale). We established the psychometric properties of the stigma measures and conducted correlation and regression analyses. RESULTS: Internal consistency was good to excellent for all measures in the Dutch sample. Small but significant differences were found between the Dutch and English samples on the total score of the Stigma Impact Scale and its subscale social isolation. Age was negatively associated with comfort disclosing to family, and desire for secrecy was negatively associated with comfort disclosing to both family and friends. CONCLUSIONS: The psychometric properties of the Dutch scales were satisfactory. Many people living with dementia would feel comfortable disclosing their diagnosis to family and friends, but stigma experiences can greatly affect this decision. Cross-cultural differences in stigma experiences in persons with dementia require further investigation.

Group cognitive stimulation therapy versus usual care for people with intellectual disabilities and dementia (CST-IDD) in the UK: protocol for a mixed-methods feasibility randomised controlled trial.

INTRODUCTION: The prevalence of dementia is almost five times higher in people with intellectual disabilities compared with the general population. However, evidence-based treatments for this population are lacking, as most randomised controlled trials for dementia interventions have not included people with intellectual disabilities. Cognitive stimulation therapy (CST) has a robust evidence base in the general dementia population, consistently showing benefits to cognition, quality of life and being cost-effective. We are conducting a mixed-methods feasibility trial of group CST for people with intellectual disabilities and dementia, to determine if a future definitive randomised controlled trial is feasible. METHODS AND ANALYSIS: Fifty individuals with intellectual disabilities and dementia will be randomised to either the intervention arm (14 sessions of group CST plus treatment as usual) or the control arm (treatment as usual). Randomisation will occur after informed consent has been obtained and baseline assessments completed. Each arm will have 25 participants, with the intervention arm divided into five or more CST groups with three to five participants in each. The outcomes will be feasibility of recruitment, acceptability and adherence of the intervention, suitability of study outcome measures and feasibility of collecting resource use data. Quantitative and qualitative approaches, including semistructured interviews with group participants, carers and group facilitators, will be employed to assess these outcomes. ETHICS AND DISSEMINATION: This study has been approved by Essex REC (Ref: 21/EE/027) and the HRA ethical approval process through the Integrated Research Application System (IRAS ID: 306 756). We plan to publish the results in peer-reviewed journals and conferences as well as provide feedback to funders, sponsors and study participants. TRIAL REGISTRATION NUMBER: ISRCTN88614460.

"The Dynamic Nature of Being a Person": An Ethnographic Study of People Living With Dementia in Their Communities.

BACKGROUND AND OBJECTIVES: A dementia diagnosis can affect social interactions. This study aims to understand how people living with dementia act as social beings within everyday interactions in their local communities. RESEARCH DESIGN AND METHODS: Focused ethnography informed by Spradley's approach to data collection and analysis. Observations in community spaces. RESULTS: Twenty-nine observations were undertaken in everyday social settings with 11 people with dementia who were part of a longitudinal interview study. Data consisted of 40 hr of observation, and researcher field notes. The overarching theme "the dynamic nature of being a person" encapsulates participants' exhibited experiences in negotiating to attain and sustain an acknowledged place in their communities. Two subthemes characterized contexts and actions: (1) "Being me-not dementia": Participants constructed narratives to assert their ontological presence in social settings. They and others used strategies to mediate cognitive changes evidencing dementia. (2) "Resisting or acquiescing to 'being absent in place'": Participants were often able to resist being absent to the gaze from others, but some social structures and behaviors led to a person being "in place," yet not having their presence confirmed. DISCUSSION AND IMPLICATIONS: People living with dementia can actively draw on personal attributes, familiar rituals, objects, and social roles to continue to present themselves as social beings. Identifying how postdiagnosis people may self-manage cognitive changes to retain their presence as a person can help health and social care practitioners and families collaborate with the person living with dementia enabling them to have a continued social presence.

Examining the Lancet Commission risk factors for dementia using Mendelian randomisation.

BACKGROUND: Dementia incidence is increasing across the globe and currently there are no disease-modifying pharmaceutical treatments. The Lancet Commission on dementia identified 12 modifiable risk factors which explain 40% of dementia incidence. However, whether these associations are causal in nature is unclear. OBJECTIVE: To examine the modifiable risk factors for dementia as identified in the Lancet Commission review using Mendelian randomisation (MR) to establish if, based on genetic evidence, these associations with different dementia subtypes are causal in nature. METHODS: Publicly available genome-wide association study data were used for 10 risk factors and Alzheimer's disease (AD), frontotemporal dementia and dementia with Lewy bodies. Two-sample MR using the inverse varianceweighted method was conducted to test for causal relationships. Weighted median MR and MR-Egger were used to test for pleiotropic effects. RESULTS: Genetic proxied risk for higher levels of smoking (OR: 0.80 (95% CI: 0.69; 0.92), p=0.002), obesity (OR: 0.87 (95% CI: 0.82; 0.92), p<0.001) and blood pressure (OR: 0.90 (95% CI: 0.82; 0.99), p=0.035) appeared to be protective against the risk of AD. Post hoc analyses indicated these associations had pleiotropic effects with the risk of coronary artery disease. Genetic proxied risk of educational attainment was found to be inconsistently associated with the risk of AD. CONCLUSIONS AND IMPLICATIONS: Post hoc analysis indicated that the apparent protective effects of smoking, obesity and blood pressure were a result of survivor bias. The findings from this study did not support those presented by the Lancet Commission. Evidence from causal inference studies should be considered alongside evidence from epidemiological studies and incorporated into reviews of the literature.

Positive psychological constructs and cognitive function: A systematic review and meta-analysis.

AIM: To synthesise evidence regarding the association between positive psychological constructs (PPCs) and cognitive function in adults aged 50 +. METHODS: Literature searches: Medline, PsycINFO, and Scopus (inception to February 2022). Studies were included if they reported on the association between at least one PPC and one objective measure of cognitive function in people aged 50 + without cognitive impairment at baseline. Where at least two studies reported on the same PPC and cognitive outcome, estimates were pooled through meta-analysis. FINDINGS: In total, 37 studies were included. There was evidence of cross-sectional associations for 'meaning in life' (verbal fluency: b = 0.09, 95 %CI [0.07, 0.11], p < .001; memory: b = 0.10, 95 %CI [0.08, 0.12], p < .001), 'purpose in life' (verbal fluency: b = 0.07, 95 %CI [0.05, 0.08], p < .001; memory: r = 0.13, 95 %CI [0.08, 0.18], p < .001), and positive affect (cognitive state: r = 0.25, 95 %CI [0.14, 0.36], p < .001; memory: r = 0.05, 95 %CI [0.02, 0.08], p < .001) with various domains of cognitive function. However, no significant results were found for life satisfaction (p = .13) or longitudinal studies investigating positive affect and memory (p = .48). Other PPCs were included in narrative syntheses only. IMPLICATIONS: Purpose and meaning in life may be sensible primary targets for interventions to promote healthy cognitive aging. More longitudinal and causal inference research is needed to better understand this association and its implications for clinical practice.

Stigma among UK family carers of people living with dementia.

BACKGROUND: Models of caregiving seldom include the role of stigma when understanding the experiences of carers of people living with dementia. AIMS: To investigate the validity of the Family Stigma Instrument (FAMSI), and use it to explore the extent to which experiences of stigma are endorsed in family carers of people living with dementia. METHOD: The FAMSI was tested with 70 carers of people living with dementia. They also completed a measure of self-esteem. RESULTS: The FAMSI demonstrated some good preliminary psychometric properties. Carers endorsed stigma by association more so than affiliate stigma constructs, suggesting that carers were aware that others viewed or treated them in a stigmatising fashion but did not endorse internalised consequences of this as much (e.g. behavioural or affective affiliate stigma). CONCLUSIONS: The FAMSI offers new avenues for understanding the contribution of stigma to caregiver burden in dementia. It also captures the positive aspects of caregiving, which may mitigate internalised stigma in family carers, and has good potential for evaluating stigma-neutralising interventions in dementia care.

Effectiveness of primary care psychological therapy services for the treatment of depression and anxiety in people living with dementia: Evidence from national healthcare records in England.

Background: Depression and anxiety are common and deleterious in people living with dementia (PLWD). It is currently unknown whether routinely provided psychological therapy can help reduce these symptoms in PLWD. This study aimed to investigate improvements in depression and anxiety symptoms over the course of therapy offered in primary care psychological therapy services in PLWD and to compare outcomes to people without dementia. Methods: National data from Improving Access to Psychological Therapies services (IAPT) across England linked with Hospital Episode Statistics data, the Mental Health Services Dataset, and HES-ONS mortality data were used to identify 1,549 PLWD who completed a course of psychological treatment in IAPT between 2012-2019 and a propensity score matched control group without identified dementia. Outcome measures included pre-post intervention changes in depression (PHQ-9) and anxiety (GAD-7) symptoms and therapy outcomes (reliable improvement, recovery, deterioration). Findings: Symptoms of depression (t(1548)=31·05, p<·001) and anxiety (t(1548)=30·31, p<·001) improved in PLWD over the course of psychological therapy with large effect sizes (depression: d=-0·83; anxiety: d=-0·80). However, PLWD were less likely to reliably improve (OR=·75, 95%CI[·63,·88], p<·001) or recover (OR=·75, 95%CI[·64,·88], p=·001), and more likely to deteriorate (OR=1·35, 95%CI[1·03,1·78], p=·029) than a matched control sample without dementia. Interpretation: Psychological therapy may be beneficial for PLWD with depression or anxiety, but it is currently not as effective as for people without dementia. More research is needed to improve access to psychological therapies and to understand this discrepancy and how therapies can be adapted to further improve outcomes. Funding: This work was supported by the Alzheimer's Society.

Intersectionality and its relevance for research in dementia care of people with a migration background.

BACKGROUND: Despite the care and support needs of migrants affected by dementia differing from the population of the country where they live now, most European countries do not provide specific strategies to address migration in their national dementia plans. The concept of intersectionality provides an innovative approach to dementia care perspectives and methodologies. OBJECTIVE: The aim is to define intersectionality and to provide examples of applying the concept to dementia care research, focusing on people with a migration background. METHODS: This article was conceptualized and discussed during virtual INTERDEM taskforce meetings in 2020/2021, while discussing identified literature on intersectionality, migration, and dementia care research. RESULTS: Using an intersectionality framework allows understanding of a person's lived experience by considering the dimensionality, co-occurrence and interlocking of factors (e.g., sex/gender, socioeconomic status, ethnicity, migration status, geographic location/place). CONCLUSION: Intersectionality can be applied as a conceptual and methodological approach to identify and address gaps in perspectives and in (dementia care) research to overcome the threat of ignorance, exclusion and discrimination.

Barriers and facilitators to providing CBT for people living with dementia: Perceptions of psychological therapists.

Many people living with dementia or mild cognitive impairment (MCI) experience anxiety and depression. Cognitive behavioural therapy (CBT) is a recommended treatment for adults, commonly provided through primary care psychological therapies services. This study explored the facilitators and barriers to providing CBT interventions for people living with dementia or MCI, as perceived by therapists working in such services. Structured interviews were conducted with 14 clinicians recruited through primary care psychological therapies services about their experiences of working with people living with dementia or MCI and their ideas about factors that enhance or hinder offering and delivering CBT to this population. Interview recordings were transcribed and analysed using thematic analysis. Credibility checks were incorporated throughout. Three themes were identified: 'attitudes towards dementia', 'competing demands', and 'pressure without support'. Perceived facilitators and barriers occurred across individual, service, and system levels. Facilitators were positive engagement and outcomes for people living with dementia or MCI, positive attitudes of clinicians, and flexibility within some services. In contrast, perceived barriers were stigma towards dementia and mental health in older adults, high pressure on staff to perform with a lack of support to do so, exclusion based on diagnosis, and inflexibility within some services. Clinicians were confident that people living with dementia or MCI could benefit from CBT, with some adaptations to delivery. There are implications for staff support and training, and for commissioning practices relating to the tension between minimal resources, equitable access, and person-centred care.

Mindfulness-based cognitive therapy for depression in people with dementia: A qualitative study on participant, carer and facilitator experiences.

BACKGROUND: Depression in dementia is common and associated with negative health outcomes. Mindfulness-based cognitive therapy is a recommended treatment of choice for recurrent depression, but its use for depression in dementia is yet to be assessed. OBJECTIVE: This study aimed to investigate the experiences of people with depression and dementia who participated in the mindfulness-based cognitive therapy intervention and those of their carers and facilitators. METHODS: This qualitative study was nested within a randomised controlled feasibility study. Semi-structured interviews were conducted with 18 people (eight people with dementia and depression, six carers and four course facilitators). Thematic analysis was used to analyse the data. FINDINGS: Several beneficial effects of mindfulness-based cognitive therapy were described. These were a sense of shared suffering among the group, greater present moment focus and awareness, various positive emotional changes, including greater self-compassion, and benefits for carers, such as the reduction of anxiety. Specific aspects of the programme were identified as particularly useful, including facilitator characteristics and certain mindfulness practices. Carer involvement, cognitive difficulties and barriers to home practice influenced engagement with the course. Facilitators described adaptations made to mindfulness-based cognitive therapy and suggested additional modifications for future groups. CONCLUSION: Results of this process evaluation suggest that mindfulness-based cognitive therapy is a potentially useful intervention for people with depression in dementia, but that further adaptation of the intervention is required to make the programme suitable for this clinical population.

Affective symptoms and risk of progression to mild cognitive impairment or dementia in subjective cognitive decline: A systematic review and meta-analysis.

AIMS: To systematically review the literature on outcomes for individuals with subjective cognitive decline (SCD) with concurrent affective symptoms. To conduct a meta-analysis to establish whether either higher depressive symptoms or higher levels of anxiety increased the risk of progression SCD to mild cognitive impairment (MCI) or dementia. METHODS: Five databases were searched from inception to February 2021 for longitudinal studies of older adults with SCD, reporting depressive and anxiety symptoms at baseline and risk of MCI or dementia at follow-up. Data were extracted and pooled using a random-effects meta-analysis. RESULTS: Twelve studies were identified. Pooled effect sizes indicated higher depressive symptoms did not increase risk of clinical progression to either MCI (RR = 0.98; 95 % CI: 0.75-1.26) or dementia (RR = 0.69; 95 % CI: 0.27-1.79). However, presence of anxiety or SCD-related worry did significantly increase risk of progression from subjective to objective cognitive impairment by 40 % (RR = 1.40; 95 % CI:1.20 - 1.63). CONCLUSIONS: Affective symptoms in the form of anxiety, but not depressive symptoms, increase the risk of progression to objective cognitive impairment in individuals with SCD. Further research should focus on establishing whether psychological interventions aimed at reducing anxiety and worry also reduce the risk of clinical progression.

Adaptation and preliminary psychometric properties of three self-stigma outcome measures for people living with dementia.

BACKGROUND: A diagnosis of dementia presents individuals with both social and psychological challenges but research on self-stigma in dementia has been largely confined to qualitative approaches due to a lack of robust outcome measures that assess change. The Stigma Impact Scale (SIS) is the most commonly used measure of self-stigma in dementia but its suitability as a tool to assess change in a UK population is unclear. Thus, the aim of this study was to identify, adapt and evaluate the acceptability and preliminary psychometric properties of self-stigma measures for people with dementia for use as measures of change. METHOD: A 4-step sequential design of identifying, selecting, adapting and testing psychometric measures as follows: 1) identification of stigma outcome measures through reviewing anti-stigma intervention literature, 2) selection of candidate measures through quality assessment (Terwee criteria) and expert consultation, 3) adaptation for UK dementia population (Stewart and colleagues Modification Framework) 4) testing of adapted measures in people living with dementia (N=40) to establish acceptability and preliminary reproducibility (test retest), criterion (concurrent with SIS) and construct (negative convergence with Rosenberg self-esteem scale) validity. RESULTS: Seven measures were identified from the review, but most were poor quality (Terwee range: 0-4). Three measures were selected for modification: Stigma Stress Scale; Secrecy subscale of the Stigma Coping Orientation Scale; Disclosure Related Distress Scale. Internal consistency and test-retest reliability were acceptable (.866≤α≤ .938; ICC .721-.774), except for the Stigma Stress Scale (α= .643) for which the component subscales (perceived harm, ability to cope) had stronger psychometric properties. Concurrent validity with the SIS was not established (r<.7) although there were significant correlations between total SIS and perceived harm (r=.587) and between internalized shame and secrecy (r=.488). Relationships with self-esteem were in the hypothesized direction for all scales and subscales indicating convergent validity. CONCLUSION: Stigma scales from mental health are not readily adapted for use with people with dementia. However there is preliminary evidence for the acceptability, reliability and validity of measures of perceived harm, secrecy and stigma impact. Further conceptual and psychometric development is required.

Feasibility and acceptability evaluation of the Promoting Independence in Dementia (PRIDE) intervention for living well with dementia.

OBJECTIVES: Post-diagnostic psychosocial interventions could play an important role in supporting people with mild dementia remain independent. The Promoting Independence in Dementia (PRIDE) intervention was developed to address this. METHOD: The mixed methods non-randomized, pre-post feasibility study occurred across England. Facilitators were recruited from the voluntary sector and memory services. Participants and their supporters took part in the three-session intervention. Outcome measures were collected at baseline and follow-up. To evaluate acceptability, focus groups and interviews were conducted with a subsample of participants and facilitators. RESULTS: Contextual challenges to delivery including national research governance changes, affected recruitment of study sites. Thirty-four dyads consented, with 14 facilitators providing the intervention. Dyads took part in at least two sessions (79%), and 73% in all three. Outcome measures were completed by 79% without difficulty, with minimal missing data. No significant changes were found on pre and post assessments. Post hoc analysis found moderate effect size improvements for self-management (SMAS instrument) in people with dementia (d = 0.41) and quality of life (EQ5D measure) in carers (d = 0.40). Qualitative data indicated that dyads found PRIDE acceptable, as did intervention facilitators. CONCLUSIONS: The three-session intervention was well accepted by participant-dyads and intervention facilitators. A randomized controlled trial of PRIDE would need to carefully consider recruitment potential across geographically varied settings and site stratification according to knowledge of contextual factors, such as the diversity of post-diagnostic services across the country. Letting sites themselves be responsible for identifying suitable intervention facilitators was successful. The self-report measures showed potential to be included in the main trial.

Online Education and Cognitive Behavior Therapy Improve Dementia Caregivers' Mental Health: A Randomized Trial.

OBJECTIVES: To compare online cognitive-behavioral therapy (CBT) with and without telephone support respectively to online psychoeducation in a randomized controlled trial (RCT) in caregivers of people with dementia with mild anxiety or depression. DESIGN: Three-arm parallel-group RCT comparing online CBT with and without telephone support respectively to online psychoeducation. SETTING AND PARTICIPANTS: Online study with caregivers of people with dementia. MEASURES: The primary outcome measure was mental health measured by General Health Questionnaire-12 (GHQ-12) at 26 weeks. Secondary outcomes included the Hospital Anxiety and Depression Scale (HADS); the Relative Stress Scale (RSS) and the Short Sense of Competency Questionnaire. The primary analysis focused on people completing GHQ-12 at both baseline and 26 weeks, evaluated using analysis of covariance. RESULTS: 638 people were randomized to the 3 treatment arms, of whom 208 were included in the analysis population. There were significant improvements in GHQ-12 in all treatment arms compared to baseline (P < .001 for all interventions), but neither CBT with nor without telephone support conferred any significant advantage compared to psychoeducation. For the secondary outcomes, there were no significant differences between CBT with telephone support and psychoeducation, but CBT without telephone support was less effective than psychoeducation with respect to HADS depression subscale [mean difference 1.86, 95% confidence interval (CI) 0.61, 3.11; P = .004] and caregiver stress (RSS mean difference 3.11, 95% CI 0.13, 6.09; P = .04). Good safety was achieved in all 3 treatment arms, with no deaths or serious adverse events. CONCLUSIONS AND IMPLICATIONS: Online CBT with telephone support and psychoeducation both achieved significant benefits over 26 weeks compared with baseline in mental health and mood, but there were no advantages for CBT compared with the psychoeducation intervention. CBT without telephone support was less effective with respect to mood outcomes than psychoeducation and should not be recommended based on current evidence.

"Who to Tell, How and When?": Development and Preliminary Feasibility of an Empowerment Intervention for People Living with Dementia Who are Fearful of Disclosing Their Diagnosis.

OBJECTIVE: This study describes the adaptation of Honest, Open, Proud (HOP), to develop an empowerment intervention supporting disclosure decision-making for dyads of people living with dementia and their chosen supporter. METHODS: Medical Research Council guidelines for developing complex interventions informed intervention development and feasibility testing. This included identifying the evidence base and theory (establishing HOP theory of change, a systematic review on decision-making in dementia, a stakeholder consultation), modelling the intervention materials with research experts (creation of version 1.0) and experts by experience (creation of version 2.0), and pilot testing the intervention recording participant observations and facilitator reflections. The final version of the intervention materials was developed with experts by experience of dementia where the accessibility of language and appropriate styles of facilitation were the focus. RESULTS: The concept of the intervention was strongly endorsed by respondents of the stakeholder consultation (209/226). Stakeholder preferences included face-to-face delivery, a manualized workbook approach and the inclusion of the primary carer during intervention delivery. Recruitment for intervention groups took place in non-NHS settings (2 small groups recruited) and NHS settings (no groups recruited). In non-NHS settings, 7 dyads agreed to take part in one of two intervention groups. Both intervention groups had over 70% attendance by participants (group 1: 72.2% group 2: 87.5%). CONCLUSION: The concept of an intervention to support diagnostic disclosure was endorsed by stakeholders; however, recruitment was challenging; the "who to tell, how and when?" intervention has the potential to fill a gap in the post-diagnostic pathway.