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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.

Background: The health-promoting qualities of participation as an opportunity for social and cognitive engagement are well known. Use of Everyday Technology such as Smartphones or ATMs, as enabling or disabling factors for out-of-home participation is however under-researched, particularly among older people with and without dementia. Out-of-home participation involves participation in places and activities outside of a person's home, in public space. Situated within the context of an increasingly technological society, the study investigated factors such as perceived risks, access to a concession travel pass and use of Everyday Technologies, and their relationship with out-of-home participation, among older people in the UK., Methods: One hundred twenty-eight older people with and without dementia in urban and rural environments in the UK, were interviewed using the Participation in ACTivities and Places OUTside Home (ACT-OUT) Questionnaire and the Everyday Technology Use Questionnaire (ETUQ). Associations between Everyday Technology use, perceived risk of falling, functional impairment, access to a concession travel pass and out-of-home participation were investigated using ordinal regression., Results: A higher probability of Everyday Technology use (Odds Ratio [OR] = 1.492; 95% Confidence Interval [CI] = 1.041-1.127), perceived risk of falling outside home (OR = 2.499; 95% CI = 1.235-5.053) and, access to a concession travel pass (OR = 3.943; 95% CI = 1.970-7.893) were associated with a higher level of out-of-home participation. However, other types of risk (getting lost; feeling stressed or embarrassed) were not associated with out-of-home participation. Having a functional impairment was associated with a low probability of a higher level of out-of-home participation (OR = .470; 95% CI = .181-1.223). Across the sample, 'outside home' Everyday Technologies were used to a higher degree than 'portable' Everyday Technologies which can be used both in and outside home., Conclusions: The study provides insights into perceived risks, access to a concession travel pass and use of Everyday Technologies, and their relationship with out-of-home participation, among older people in the UK. Increased knowledge about factors associated with out-of-home participation may help to guide targeted health and social care planning.

Background: Memory services often see people with early stage dementia who are largely independent and able to participate in community activities but who run the risk of reducing activities and social networks. PRIDE is a self-management intervention designed to promote living well and enhance independence for people with mild dementia. This study aims to examine the feasibility of conducting a definitive randomised trial comparing the clinical and cost-effectiveness of the PRIDE intervention offered in addition to usual care or with usual care alone., Methods/design: PRIDE is a parallel, two-arm, multicentre, feasibility, randomised controlled trial (RCT). Eligible participants aged 18 or over who have mild dementia (defined as a score of 0.5 or 1 on the Clinical Dementia Rating Scale) who can participate in the intervention and provide informed consent will be randomised (1:1) to treatment with the PRIDE intervention delivered in addition to usual care, or usual care only. Participants will be followed-up at 3 and 6 month's post-randomisation. There will be an option for a supporter to join each participant. Each supporter will be provided with questionnaires at baseline and follow-ups at 3 to 6 months. Embedded qualitative research with both participants and supporters will explore their perspectives on the intervention investigating a range of themes including acceptability and barriers and facilitators to delivery and participation. The feasibility of conducting a full RCT associated with participant recruitment and follow-up of both conditions, intervention delivery including the recruitment, training, retention of PRIDE trained facilitators, clinical outcomes, intervention and resource use costs and the acceptability of the intervention and study related procedures will be examined., Discussion: This study will assess whether a definitive randomised trial comparing the clinical and cost-effectiveness of whether the PRIDE intervention offered in addition to usual care is feasible in comparison to usual care alone, and if so, will provide data to inform the design and conduct of a future trial., Trial Registration: ISRCTN, ISRCTN11288961, registered on 23 October 2019, http://www.isrctn.com/ISRCTN12345678 Protocol V2.1 dated 19 June 2019.

Background: Depression and dementia are major public health problems in the UK. Depression in early-stage dementia is very common and significantly reduces quality of life, speeds cognitive decline and increases functional impairment. Mindfulness-Based Cognitive Therapy (MBCT) is an effective depression prevention programme, and the National Institute for Clinical Excellence (NICE) has suggested that MBCT is a priority for implementation. Alongside this, there is emerging evidence demonstrating promising results in relation to the benefits of adapted mindfulness interventions for people with dementia, suggesting that it could be beneficial in reducing depressive symptoms and in slowing deterioration in cognitive functions such as sustained attention, distraction inhibition and task switching., Methods: The design is a single-blind randomised controlled feasibility trial. Participants with mild to moderate depression and early stages of dementia will be recruited from the participating memory services. Participants will receive either immediate or delayed access to an 8-week MBCT programme. Participants will be assessed by a blind assessor and complete cognitive and mood-related outcome measures before and after the intervention. This feasibility study will test the trial design and assess recruitment, retention, acceptability and adherence, as well as providing preliminary efficacy data., Discussion: This study will inform the design and sample size for a future full randomised controlled trial (RCT), which will be carried out to determine the effectiveness of the intervention in reducing depressive symptoms in people with early stages of dementia., Trial Registration: ClinicalTrials.gov ISRCTN16382776.

Conducting a pilot trial is important in preparing for, and justifying investment in, the ensuing larger trial. Pilot trials using the same design and methods as the subsequent main trial are ethically and financially advantageous especially when pilot and main trial data can be pooled. For explanatory trials in which internal validity is paramount, there is little room for variation of methods between the pilot and main trial. For pragmatic trials, where generalisability or external validity is key, greater flexibility is written into trial protocols to allow for 'real life' variation in procedures. We describe the development of a checklist for use in decision-making on whether pilot data can be carried forward to the main trial dataset without compromising trial integrity. We illustrate the use of the checklist using a pragmatic trial of psychosocial interventions for family carers of people with dementia as a case study.

Background: Many people with dementia experience anxiety, which can lead to decreased independence, relationship difficulties and increased admittance to care homes. Anxiety is often treated with antipsychotic medication, which has limited efficacy and serious side effects. Cognitive behavioural therapy (CBT) is widely used to treat anxiety in a range of populations, yet no RCTs on CBT for anxiety in dementia exist. This study aims to develop a CBT for anxiety in dementia manual and to determine its feasibility in a pilot RCT., Methods/design: Phase I involves the development of a CBT for anxiety in dementia manual, through a process of (1) focus groups, (2) comprehensive literature reviews, (3) expert consultation, (4) a consensus conference and (5) field testing. Phase II involves the evaluation of the manual with 50 participants with mild to moderate dementia and anxiety (and their carers) in a pilot, two-armed RCT. Participants will receive either ten sessions of CBT or treatment as usual. Primary outcome measures are anxiety and costs. Secondary outcome measures are participant quality of life, behavioural disturbance, cognition, depression, mood and perceived relationship with the carer, and carer mood and perceived relationship with the person with dementia. Measures will be administered at baseline, 15 weeks and 6 months. Approximately 12 qualitative interviews will be used to gather service-users' perspectives on the intervention., Discussion: This study aims to determine the feasibility of CBT for people with anxiety and dementia and provide data on the effect size of the intervention in order to conduct a power analysis for a definitive RCT. The manual will be revised according to qualitative and quantitative findings. Its publication will enable its availability throughout the NHS and beyond., Trial Registration: ISRCTN64806852.

Background: Peer support interventions can improve carer wellbeing and interventions that engage both the carer and person with dementia can have significant mutual benefits. Existing research has been criticised for inadequate rigour of design or reporting. This paper describes the protocol for a complex trial that evaluates one-to-one peer support and a group reminiscence programme, both separately and together, in a factorial design., Design: A 2 × 2 factorial multi-site randomised controlled trial of individual peer support and group reminiscence interventions for family carers and people with dementia in community settings in England, addressing both effectiveness and cost-effectiveness., Discussion: The methods described in this protocol have implications for research into psychosocial interventions, particularly complex interventions seeking to test both individual and group approaches.