A predictive model of carer resilience in dementia family caregiving: A structural equation modelling approach.

OBJECTIVES: This study aimed to investigate the mediating effects of quality of the caregiving relationship and other carer and person with dementia variables in predicting carer resilience over time. METHOD: Carers of people with mild and moderate dementia in community settings completed baseline (n = 176 dyads) and six-month follow-up assessments (n = 139 dyads). Causal mediation analysis was conducted using Pearson Correlation and Structural Equation Modelling (SEM) to examine longitudinal predictors of carer resilience, and the effect of several mediating person with dementia, and carer factors on carer resilience over time. RESULTS: At 6-month follow-up, higher levels of carer resilience were longitudinally correlated with higher ratings of perceived relationship quality by people with dementia (r = 0.53 p ≤ 0.01), and lower levels of emotional distress symptoms by carer's (r = -0.59 p ≤ 0.01). Mediation analyses showed that people with dementia perspectives of the quality of the caregiving relationship mediated the relationship between carer distress specific to neuropsychiatric symptoms (ß = -0.32, p ≤ 0.001) and carer resilience (ß = 0.53, p ≤ 0.001) over time. The final SEM provided a good fit for the data (X 2  = 0.12, p = 0.72, CFI = 1.00, NFI = 0.99, and Root Mean Square Error of Approximation = 0.001). CONCLUSION: Higher ratings of perceived relationship quality by people with dementia, and lower levels of carer emotional distress predicted higher carer resilience at follow-up. People with dementia perspectives of the quality of the caregiving relationship mediated the relationship between carer distress specific to neuropsychiatric symptoms and carer resilience over time. Our findings indicate that interventions aimed at strengthening the caregiving relationship might have a protective long-term effect for carer resilience in dementia caregiving.

Psychological treatments for depression and anxiety in dementia and mild cognitive impairment.

BACKGROUND: Experiencing anxiety and depression is very common in people living with dementia and mild cognitive impairment (MCI). There is uncertainty about the best treatment approach. Drug treatments may be ineffective and associated with adverse effects. Guidelines recommend psychological treatments. In this updated systematic review, we investigated the effectiveness of different psychological treatment approaches. OBJECTIVES: Primary objective To assess the clinical effectiveness of psychological interventions in reducing depression and anxiety in people with dementia or MCI. Secondary objectives To determine whether psychological interventions improve individuals' quality of life, cognition, activities of daily living (ADL), and reduce behavioural and psychological symptoms of dementia, and whether they improve caregiver quality of life or reduce caregiver burden. SEARCH METHODS: We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's register, MEDLINE, Embase, four other databases, and three trials registers on 18 February 2021. SELECTION CRITERIA: We included randomised controlled trials (RCTs) that compared a psychological intervention for depression or anxiety with treatment as usual (TAU) or another control intervention in people with dementia or MCI. DATA COLLECTION AND ANALYSIS: A minimum of two authors worked independently to select trials, extract data, and assess studies for risk of bias. We classified the included psychological interventions as cognitive behavioural therapies (cognitive behavioural therapy (CBT), behavioural activation (BA), problem-solving therapy (PST)); 'third-wave' therapies (such as mindfulness-based cognitive therapy (MBCT)); supportive and counselling therapies; and interpersonal therapies. We compared each class of intervention with control. We expressed treatment effects as standardised mean differences or risk ratios. Where possible, we pooled data using a fixed-effects model. We used GRADE methods to assess the certainty of the evidence behind each result. MAIN RESULTS: We included 29 studies with 2599 participants. They were all published between 1997 and 2020. There were 15 trials of cognitive behavioural therapies (4 CBT, 8 BA, 3 PST), 11 trials of supportive and counselling therapies, three trials of MBCT, and one of interpersonal therapy. The comparison groups received either usual care, attention-control education, or enhanced usual care incorporating an active control condition that was not a specific psychological treatment. There were 24 trials of people with a diagnosis of dementia, and five trials of people with MCI. Most studies were conducted in community settings. We considered none of the studies to be at low risk of bias in all domains.  Cognitive behavioural therapies (CBT, BA, PST) Cognitive behavioural therapies are probably slightly better than treatment as usual or active control conditions for reducing depressive symptoms (standardised mean difference (SMD) -0.23, 95% CI -0.37 to -0.10; 13 trials, 893 participants; moderate-certainty evidence). They may also increase rates of depression remission at the end of treatment (risk ratio (RR) 1.84, 95% CI 1.18 to 2.88; 2 studies, with one study contributing 2 independent comparisons, 146 participants; low-certainty evidence). We were very uncertain about the effect of cognitive behavioural therapies on anxiety at the end of treatment (SMD -0.03, 95% CI -0.36 to 0.30; 3 trials, 143 participants; very low-certainty evidence). Cognitive behavioural therapies probably improve patient quality of life (SMD 0.31, 95% CI 0.13 to 0.50; 7 trials, 459 participants; moderate-certainty evidence) and activities of daily living at end of treatment compared to treatment as usual or active control (SMD -0.25, 95% CI -0.40 to -0.09; 7 trials, 680 participants; moderate-certainty evidence). Supportive and counselling interventions Meta-analysis showed that supportive and counselling interventions may have little or no effect on depressive symptoms in people with dementia compared to usual care at end of treatment (SMD -0.05, 95% CI -0.18 to 0.07; 9 trials, 994 participants; low-certainty evidence). We were very uncertain about the effects of these treatments on anxiety, which was assessed only in one small pilot study. Other interventions There were very few data and very low-certainty evidence on MBCT and interpersonal therapy, so we were unable to draw any conclusions about the effectiveness of these interventions. AUTHORS' CONCLUSIONS: CBT-based treatments added to usual care probably slightly reduce symptoms of depression for people with dementia and MCI and may increase rates of remission of depression. There may be important effect modifiers (degree of baseline depression, cognitive diagnosis, or content of the intervention). CBT-based treatments probably also have a small positive effect on quality of life and activities of daily living. Supportive and counselling interventions may not improve symptoms of depression in people with dementia. Effects of both types of treatment on anxiety symptoms are very uncertain. We are also uncertain about the effects of other types of psychological treatments, and about persistence of effects over time. To inform clinical guidelines, future studies should assess detailed components of these interventions and their implementation in different patient populations and in different settings.

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.

Development and preliminary validation of the Meaningful and Enjoyable Activities Scale (MEAS) in mild dementia.

BACKGROUND: Engaging in meaningful activity is an important contributor to well-being in late life. This study aimed to develop a new measure of meaningful and enjoyable activities in people living with mild dementia. METHODS: The study consisted of four phases: (a) a review of measures of meaningful activity in older people; (b) interviews with people with dementia and their carers (n = 32), (c) expert opinion; and (d) feasibility testing in a pilot randomised controlled trial (n = 63). RESULTS: The development process resulted in a 20-item questionnaire. The Meaningful and Enjoyable Activities Scale (MEAS) evidenced appropriate levels of internal consistency (α = .79). Higher scores correlated with higher functional independence (r = -.605, P < .001), patient (r = .330, P = .010) and carer-rated patient quality of life (r = .505, P < .001). Multiple regression analyses showed that functional independence made a significant independent contribution in predicting higher levels of meaningful activity (F[7,45] = 6.75, P < .001, R2 = .512; ß = -.444, P = .001). Confirmatory factor analysis indicated that a revised three-factor 9-item model provided good fit for the data (X2 = 22.74, P = .54, GFI = 0.93, RMSE = 0.00), with leisure-time physical activity, social engagement and mentally stimulating activities as the key dimensions. CONCLUSION: Our study provides support for the construct of meaningful activity in people with mild dementia. Although we find preliminary evidence that the MEAS has adequate psychometric properties, future large scale studies are required to test its validity further and responsiveness to change.

Relational experiences of people seeking help and assessment for subjective cognitive concern and memory loss.

Objective: To understand the experience of people who seek help for subjective cognitive concern and memory loss, including people not referred for further assessment. To understand the patients' perspective of the medical process of receiving a cognitive assessment. This work is situated within the context of policy priorities for dementia diagnosis.Methods: Participants with and without dementia were recruited through NHS trusts and community organisations in four regional areas in England. Data were collected using longitudinal qualitative interviews. Transcript data were thematically analysed.Results: Sample of 41 people (mean 75 years, 25 dementia diagnoses). Interpretative thematic analyses focused on the presence or absence of trust in relational experiences. There were three transition points where trust could be specifically developed or undermined: (1) deciding to seek help; (2) healthcare practitioners' response to help-seeking; (3) process and outcome of assessment. Triggers for help-seeking for subjective cognitive concern were being prompted by family and knowing a relative with dementia. When participants perceived healthcare practitioners' behaviour as dismissive, they had less trust in the outcome of the healthcare encounter. Misunderstandings and absence of trust in assessment processes led to participants stating they did not fully agree with the outcomes of the assessment.Conclusions: Healthcare practitioners have an important role in supporting people with subjective cognitive concern ensuring patients have trust in assessment outcomes. Where the validity of the assessment process is seen as ambiguous, people can be left dealing with uncertainty, rather than being clear about ways they can manage their condition, situation or status.

Maintaining Social Connections in Dementia: A Qualitative Synthesis.

The clinical symptoms of dementia include difficulty with speech, poor short-term memory, and changes in behavior. These symptoms can affect how the person with dementia understands and performs in social interactions. This qualitative review investigated how people with mild to moderate dementia managed social connections. A systematic search of social science databases retrieved 13 articles; data were synthesized using thematic analysis. Results established the work undertaken by people with dementia to maintain and present a social persona seen as socially acceptable. Interpretations are contextualized within Goffman and Sabat's theories on "self." People with dementia were agentic in impression management: undertaking work to maintain recognized social roles, while being aware of when their illness led to others discrediting them. Wider recognition of strategies used to maintain a social self could inform interventions designed to increase capability and confidence in co-managing social connections following dementia diagnosis.

Emotional distress mediates the relationship between cognitive failures, dysfunctional coping, and life satisfaction in older people living in sheltered housing: A structural equation modelling approach.

OBJECTIVES: Little is known about the relationship between cognitive failures, emotional distress, and life satisfaction in late life. Experiencing cognitive failures is a known risk for declining life satisfaction in older people, although the mechanisms that may explain cognitive failures remain unclear. This study investigated the associations between psychosocial factors, cognitive failures, and coping strategies and their influence on life satisfaction in older people living in sheltered housing. METHODS: A total of 204 older people living in sheltered housing in London were recruited (mean age = 75.08 years). We used structural equation modelling path analysis to test several hypotheses based on theories of emotional distress (anxiety and depression) and cognitive failures and their influence on life satisfaction. RESULTS: Self-reported depressive symptoms (29.5%), anxiety symptoms (33%), and cognitive failures (41%) were common. The final model had a good fit (X2  = 2.67; DF = 2; P = 0.26; NFI = 0.99, CFI = 0.99; RMSEA = 0.04); analyses showed that both cognitive failures and dysfunctional coping were significantly associated and exerted a moderate effect on emotional distress. Cognitive failures and dysfunctional coping had an indirect effect on life satisfaction through emotional distress which directly decreased levels of life satisfaction (ß = -0.70, P ≤ 0.001). CONCLUSIONS: This study found that experiencing emotional distress helped to explain the association and negative effects of cognitive failures and dysfunctional coping on life satisfaction in older people living in sheltered housing. These findings contribute to our understanding of the key mechanisms of experiencing cognitive failures in late life and can help guide future interventions of well-being in later life.

Embedding patient and public involvement: Managing tacit and explicit expectations.

BACKGROUND: Evidencing well-planned and implemented patient and public involvement (PPI) in a research project is increasingly required in funding bids and dissemination activities. There is a tacit expectation that involving people with experience of the condition under study will improve the integrity and quality of the research. This expectation remains largely unproblematized and unchallenged. OBJECTIVE: To critically evaluate the implementation of PPI activity, including co-research in a programme of research exploring ways to enhance the independence of people with dementia. DESIGN: Using critical cases, we make visible and explicate theoretical and moral challenges of PPI. RESULTS: Case 1 explores the challenges of undertaking multiple PPI roles in the same study making explicit different responsibilities of being a co-applicant, PPI advisory member and a co-researcher. Case 2 explores tensions which arose when working with carer co-researchers during data collection; here the co-researcher's wish to offer support and advice to research participants, a moral imperative, was in conflict with assumptions about the role of the objective interviewer. Case 3 defines and examines co-research data coding and interpretation activities undertaken with people with dementia, reporting the theoretical outputs of the activity and questioning whether this was co-researcher analysis or PPI validation. CONCLUSION: Patient and public involvement activity can empower individual PPI volunteers and improve relevance and quality of research but it is a complex activity which is socially constructed in flexible ways with variable outcomes. It cannot be assumed to be simple or universal panacea for increasing the relevance and accessibility of research to the public.

The impact of individual Cognitive Stimulation Therapy (iCST) on cognition, quality of life, caregiver health, and family relationships in dementia: A randomised controlled trial.

BACKGROUND: Cognitive stimulation therapy (CST) is a well-established group psychosocial intervention for people with dementia. There is evidence that home-based programmes of cognitive stimulation delivered by family caregivers may benefit both the person and the caregiver. However, no previous studies have evaluated caregiver-delivered CST. This study aimed to evaluate the effectiveness of a home-based, caregiver-led individual cognitive stimulation therapy (iCST) program in (i) improving cognition and quality of life (QoL) for the person with dementia and (ii) mental and physical health (well-being) for the caregiver. METHODS AND FINDINGS: A single-blind, pragmatic randomised controlled trial (RCT) was conducted at eight study sites across the United Kingdom. The intervention and blinded assessment of outcomes were conducted in participants' homes. Three hundred fifty-six people with mild to moderate dementia and their caregivers were recruited from memory services and community mental health teams (CMHTs). Participants were randomly assigned to iCST (75, 30-min sessions) or treatment as usual (TAU) control over 25 wk. iCST sessions consisted of themed activities designed to be mentally stimulating and enjoyable. Caregivers delivering iCST received training and support from an unblind researcher. Primary outcomes were cognition (Alzheimer's Disease Assessment Scale-cognitive [ADAS-Cog]) and self-reported QoL (Quality of Life Alzheimer's Disease [QoL-AD]) for the person with dementia and general health status (Short Form-12 health survey [SF-12]) for the caregiver. Secondary outcomes included quality of the caregiving relationship from the perspectives of the person and of the caregiver (Quality of the Carer Patient Relationship Scale) and health-related QoL (European Quality of Life-5 Dimensions [EQ-5D]) for the caregiver. Intention to treat (ITT) analyses were conducted. At the post-test (26 wk), there were no differences between the iCST and TAU groups in the outcomes of cognition (mean difference [MD] = -0.55, 95% CI -2.00-0.90; p = 0.45) and self-reported QoL (MD = -0.02, 95% CI -1.22-0.82; p = 0.97) for people with dementia, or caregivers' general health status (MD = 0.13, 95% CI -1.65-1.91; p = 0.89). However, people with dementia receiving iCST rated the relationship with their caregiver more positively (MD = 1.77, 95% CI 0.26-3.28; p = 0.02), and iCST improved QoL for caregivers (EQ-5D, MD = 0.06, 95% CI 0.02-0.10; p = 0.01). Forty percent (72/180) of dyads allocated to iCST completed at least two sessions per week, with 22% (39/180) completing no sessions at all. Study limitations include low adherence to the intervention. CONCLUSIONS: There was no evidence that iCST has an effect on cognition or QoL for people with dementia. However, participating in iCST appeared to enhance the quality of the caregiving relationship and caregivers' QoL. TRIAL REGISTRATION: The iCST trial is registered with the ISRCTN registry (identified ISRCTN 65945963, URL: DOI 10.1186/ISRCTN65945963).

The effects on carer well-being of carer involvement in cognition-based interventions for people with dementia: a systematic review and meta-analysis.

OBJECTIVES: To investigate the effects on carer well-being of carer involvement in cognition-based interventions (CBIs) for people with dementia. METHODS: A review and meta-analysis were performed. We searched electronic databases for randomised controlled trials (RCTs). Two reviewers worked independently to select trials, extract data and assess the risk of bias. RESULTS: A total of 4737 studies was identified. Eight RCTs met the inclusion criteria. Only seven studies with 803 dyads of people with dementia and carers were included in the meta-analysis. Evidence indicated that carer involvement in CBIs for people with dementia had a beneficial effect on carers' quality of life with effect size Hedges' g = 0.22; 95% confidence interval of 0.02 to 0.42, z = 2.19 and p = 0.03. Carers' depression levels were reduced in the intervention group with effect size Hedges' g = 0.17; 95% confidence interval of 0.02 to 0.32, z = 2.19 and p = 0.03. No significant differences were observed in levels of anxiety symptoms, caregiving relationship and carer burden in the intervention group compared to those in the control group. CONCLUSION: Because CBIs are designed to deliver benefit for people with dementia, the collateral benefits for carers have potential implications for the importance of CBIs in service delivery and may contribute to cost effectiveness. However, there remains a lack of quality of research in this area. Particularly, in some outcomes, there was a lack of consistency of results, so the findings should be interpreted with caution. Future studies of the impact of CBIs on carers with larger samples and high-quality RCTs are warranted. Copyright © 2017 John Wiley & Sons, Ltd.

The experiences of people with dementia and their carers participating in individual cognitive stimulation therapy.

BACKGROUND: The carer-delivered individual cognitive stimulation therapy (iCST) was developed to improve cognition and quality of life of people with dementia. This study aims to explore people with dementia and family carers' concepts of mental stimulation and experiences of participating in the iCST intervention. METHODS: A sub-sample of 23 dyads of people with dementia and their family carers who completed the iCST intervention took part in semi-structured in-depth interviews. Data were analysed using framework analysis. RESULTS: Three main themes emerged, 'Concepts of mental stimulation', 'Experiencing changes in everyday life as a result of participating in iCST' and 'Carer adherence to the intervention' along with 10 sub-themes. The overall experience of participating in iCST was described as having opportunities to engage in enjoyable mentally stimulating activities, motivation to stay active and bringing people with dementia and their carers 'together'. Family carers mentioned that finding time to do the sessions and their relatives being reluctant to engage in the activities could hinder their participation in the intervention. CONCLUSIONS: People with dementia and their family carers found iCST stimulating and enjoyable, but many had difficulty delivering all the sessions as planned. Family carers suggested that providing extra support by involving other people in delivering the intervention may help to improve adherence to the intervention. iCST may be a useful tool to encourage people with dementia and their carers to communicate. Copyright © 2017 John Wiley & Sons, Ltd.

Field-testing phase of the development of individual cognitive stimulation therapy (iCST) for dementia.

BACKGROUND: Cognitive Stimulation Therapy (CST) groups for people with dementia are available nationally, and internationally through voluntary organisations, memory services, and in residential care settings. However, groups may not be accessible or best suited for all. Individual Cognitive Stimulation Therapy (iCST) has been developed to provide another means of accessing CST. METHODS: The programme was field tested by 22 dyads (carers and people with dementia). Dyads were trained in the iCST approach and provided with a manual and accompanying resources. Researchers contacted dyads weekly to provide support and gather adherence data. Quantitative feedback about each session was also collected using 'Monitoring Progress' forms. Upon completion of their allocation sessions, researchers interviewed dyads about their experience. In total, nine dyads were followed up. Inductive thematic analysis was performed on the qualitative data. The aims of field testing were to assess the feasibility of the programme, and the appropriateness of the iCST materials. RESULTS: Sixty-two percent of the themes received an overall 'high' rating, and the majority of activities were classed as 'low' difficulty. Common barriers to completing sessions were; lack of time, illness, and motivation. Carers felt the manual and resources were 'good' and easy to use. Benefits of the programme for the person included; improvements in communication, mood, and alertness. The programme also gave carers insight into the person's abilities and interests, and provided a new channel of communication. Little support was needed to deliver the programme. CONCLUSIONS: Implementation of the iCST intervention was feasible. However, the majority of dyads completed fewer than three sessions per week. The training and support package appeared to be suitable as carers were able to deliver the intervention without intensive support. Barriers occurred largely as a result of life commitments, rather than problems with the intervention itself. This study was limited by a high loss to follow up rate. The effectiveness and cost effectiveness of iCST were investigated in a large scale randomised controlled trial (RCT). TRIAL REGISTRATION: ISRCTN65945963 Date of trial registration: 05/05/2010.

Social support group interventions in people with dementia and mild cognitive impairment: a systematic review of the literature.

OBJECTIVES: Despite the large number of studies evaluating social support groups for people with dementia, there are no systematic reviews of current evidence. The aim of this study was to evaluate the effectiveness of social support group interventions for people with dementia and mild cognitive impairment. METHODS: A systematic review was performed. We searched electronic databases for randomised controlled trials. Two reviewers worked independently to select trials, extract data and assess risk of bias. RESULTS: A total of 546 studies were identified of which two met the inclusion criteria. We were not able to pool data for further analyses, as the interventions tested in the studies meeting the inclusion criteria were too dissimilar in content. The first trial (n = 136) showed a benefit of early-stage memory loss social support groups for depression and quality of life in people with dementia. The second trial (n = 33) showed that post-treatment self-reported self-esteem was higher in the group receiving a multicomponent intervention of social support compared with that in the no intervention control group. CONCLUSIONS: Limited data from two studies suggest that support groups may be of psychological benefit to people with dementia by reducing depression and improving quality of life and self-esteem. These findings need to be viewed in light of the small number, small sample size and heterogeneous characteristics of current trials, indicating that it is difficult to draw any conclusions. More multicentre randomised controlled trials in social support group interventions for people with dementia are needed.

"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.

Effectiveness of treatments for people living with severe dementia: A systematic review and meta-analysis of randomised controlled clinical trials.

BACKGROUND: Dementia is a progressive neurodegenerative syndrome that has no cure. Although a significant proportion of people with dementia progress into the severe stages of the disease, evidence on the clinical effectiveness of treatments for people with severe dementia remains limited. AIMS: To systematically review the effectiveness of pharmacological and non-pharmacological treatments for people living with severe dementia and assess the quality of the evidence. METHOD: We searched MEDLINE, EMBASE, PsycINFO, CINAHL and online clinical trial registers up to January 2022, for Randomised Controlled Trials (RCT) in people living with severe dementia. Quality and risk of bias were assessed independently by two authors. RESULTS: A total of 30 trials met our inclusion criteria of which 14 evaluated the effectiveness of pharmacological treatments, and 16 evaluated a non-pharmacological intervention. Pharmacological treatments: Meta-analyses indicated that pharmacological treatments (donepezil: 10 mg, 5 mg; galantamine: 24 mg; memantine: 10 mg) are associated with better outcomes compared to placebo for: severity of symptoms (standardized mean difference (SMD) 0.37, 95% CI 0.26-0.48; 4 studies; moderate-certainty evidence), activities of daily living (SMD 0.15, 95% CI 0.04-0.26; 5 studies; moderate-certainty evidence), and clinical impression of change (Relative Risk (RR) 1.34, 95% CI 1.14-1.57; 4 studies; low-certainty evidence). Pharmacological treatments were also more likely to reduce mortality compared to placebo (RR 0.60, 95% CI 0.40-0.89; 6 studies; low-certainty evidence). Non-pharmacological treatments: Five trials were included in the meta-analyses of non-pharmacological interventions (multi-sensory stimulation, needs assessment, and activities-based interventions); results showed that non-pharmacological interventions may reduce neuropsychiatric symptoms of dementia compared to usual care (SMD -0.33, 95% CI -0.59 to -0.06; low certainty evidence). CONCLUSIONS: There is moderate-certainty evidence that pharmacological treatments may decrease disease severity and improve function for people with severe dementia. Non-pharmacological treatments are probably effective in reducing neuropsychiatric symptoms but the quality of evidence remains low. There is an urgent need for high-quality evidence for other outcomes and for developing service-user informed interventions for this under-served group.

Development of a Psychological Intervention to Promote Meaningful Activity in People Living With Mild Dementia: An Intervention Mapping Approach.

BACKGROUND AND OBJECTIVES: Despite the importance of meaningful activity in mild dementia, only limited data are available on the development of interventions supporting people with mild dementia to engage in meaningful activity. In this article, we describe the development of an intervention that responds to this need. RESEARCH DESIGN AND METHODS: Intervention mapping (IM), an evidence-based approach, was used to develop STAYING ACTIVE (STAYing well and active-schedulINg meaninGful and enjoyAble aCTIvities to promote Vitality and wEll-being in mild dementia). The first step, a needs assessment, comprised a literature review, focus groups, and individual interviews with service users. Performance objectives of the intervention were formulated in Step 2, followed by the development of theory-based methods in Step 3. In Step 4, the new intervention was developed based on data collected in previous steps, existing interventions, and pilot testing. Qualitative data were analyzed using framework analysis. RESULTS: The needs assessment indicated that people with dementia and their carers view "staying active" as an important part of "enjoying life." Adapting to loss through compensation and receiving support were key facilitators of engaging in meaningful activity. Ecological, psychosocial, and activity-oriented theories guided the development of theory-based intervention strategies, which were based on awareness, skills, and addressing barriers of meaningful activity. DISCUSSION AND IMPLICATIONS: STAYING ACTIVE is grounded on theory, and service user experiences and aims at promoting meaningful activity in mild dementia. The IM framework may be useful in the development of future psychosocial interventions for people with dementia, facilitating transparency when efficacy is evaluated.

Anger and Dementia Caregiving: A Systematic Review of the Effects of Anger and Hostility on Caregivers' Physical Health.

Background: Anger is commonly experienced by family caregivers of people living with dementia yet its effect on caregivers' physical health remains unknown. Objective: The primary aim of this study was to systematically review current evidence on the effects of anger and hostility on caregivers' physical health. Methods: We searched Medline, EMBASE, PubMed, and PsycINFO up to January 2022. Two review authors independently extracted data on study characteristics, study quality, and effect sizes of associations of anger and hostility with caregiver health outcomes. Results: We found eight studies examining the effects of anger and hostility on caregivers' physical health reporting on a total of 937 participants, of which four were cross-sectional and four were longitudinal. Overall findings indicated that higher levels of anger and hostility exerted a negative effect on caregivers' physical health. Higher anger control was longitudinally associated with increased weight gain (ß= 1.13, p < 0.001), whereas higher anger out predicted higher glucose dysregulation at long-term follow-up (r = 0.27, p < 0.05). Higher levels of caregiver hostility were associated with increased risk of chronic low-grade inflammation long-term (r = 0.18, p < 0.05), and increased risk of cognitive decline over time (r = -0.16, p < 0.05). Conclusion: Our review provides the first systematic synthesis of the evidence demonstrating the harmful effects of anger and hostility on dementia caregivers' health and highlights the need for preventative interventions to support family caregivers experiencing high levels of anger.

Behavioral Activation for Promoting Well-Being in Mild Dementia: Feasibility and Outcomes of a Pilot Randomized Controlled Trial.

Engaging in meaningful and enjoyable activities is an important contributor to well-being and maintaining good quality of life. There is a paucity of randomized controlled trials of interventions supporting people with mild dementia to engage in meaningful and purposeful activity. The aim of this study was to assess whether Behavioral Activation (BA) is an acceptable psychological intervention for people with mild dementia and whether a large-scale trial is feasible. Participants were randomly assigned to BA (n = 42) or treatment as usual (TAU) (n = 21). BA aimed at increasing engagement in enjoyable and meaningful activity, and preventing low mood. Follow-up was at 3 and 6 months. Assessors were blind to treatment allocation (trial registration number: ISRCTN75503960). Retention rate was above 80% at both assessment time points. Treatment acceptability and credibility were high. Depressive symptoms remained unchanged in both groups. There was evidence of improvement associated with BA for every day function (-3.92, 95% Confidence Interval (CI) -6.87 to -0.97), and engagement in meaningful and enjoyable activity (5.08, 95% CI 0.99 to 9.16) post-treatment (3 months) in comparison to TAU. Both carer-rated patient health-related quality of life (0.16, 95% CI 0.04 to 0.28) and physical health (11.31, 95% CI 2.03 to 20.59) showed evidence of improvement at 3 months. Improvements in meaningful and enjoyable activity were maintained at 6 months.BA for people with mild dementia is feasible and acceptable and may be associated with clinically significant changes in function and quality of life. A full scale randomized controlled trial of clinical effectiveness is now needed.

Promoting Independence in Dementia (PRIDE): protocol for a feasibility randomised controlled trial.

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.