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.

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.

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.

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.

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.

Thought-feeling discrimination in people with dementia: adaptation and preliminary validation of the first dementia-specific measure.

OBJECTIVE: There is emerging evidence that cognitive behavioral therapy (CBT) can be effective for treating anxiety and depression in people living with dementia (PLWD). Discriminating between thoughts and feelings is a critical element of CBT and also of relevance to emotional understanding more generally. The aim of the present study was the structured adaptation and preliminary validation of an existing measure of thought-feeling discrimination for use in PLWD. METHODS/DESIGN: The Behavior Thought Feeling Questionnaire (BTFQ) was adapted via expert and service-user consultation for use in PLWD. One hundred two PLWD and 77 people aged over 65 years who did not have measurable cognitive impairments completed the adapted measure along with two measures of emotional recognition and reasoning. The factor structure of this measure was examined and the measure reduced. RESULTS: Factor analysis suggested a two-factor solution with thought and feeling items loading on separate factors. The behavior items were not included in scoring due to high cross-loading and ceiling effects, leaving a 14-item measure with two subscales. Thus, an adapted measure was created (named the BTFQ-D), which showed moderate convergent validity in the PLWD but not the older adult sample. Both thought and feeling subscales showed good internal consistency. CONCLUSIONS: The BTFQ-D showed preliminary validity as a measure of thought-feeling discrimination in PLWD. It may have utility in measuring readiness for CBT as part of clinical assessment. Further validation is required.

Perceived risks, concession travel pass access and everyday technology use for out-of-home participation: cross-sectional interviews among older people in the UK.

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.

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.

The nature of decision-making in people living with dementia: a systematic review.

Objective: The objectives of this systematic review were to: 1) understand how people living with dementia are involved in making decisions; 2) explore the different decisional styles and domains of decision-making that people living with dementia experience and 3) identify what influences the level of decisional involvement of people living with dementia.Methods: A systematic review of literature identified studies from Medline, PsycINFO, HAPI and CINAHL databases. Search terms related to decision-making and dementia. Qualitative and quantitative research designs were included. Appraisal of included studies was done using quality ratings. All studies focused on how decision-making took place. Extracted findings were synthesised narratively with concept mapping, conceptualisation and an exploration of connections between studies to develop an overall model of decision-making involvementResults: Fifteen studies fully met the eligibility criteria (thirteen qualitative and two quantitative). All studies had moderate (n = 10) to high (n = 5) quality ratings. Participants were predominantly people living with dementia (n = 13), Parkinson's disease and stroke. The model of decision-making encompasses four decisional styles (managed autonomy, mutual, reductive and delegated) determined by different degrees of involvement from the person living with dementia and their supporter. The decisional style implemented was influenced by the presence or absence of background (the Freedom of Choice framework) and contextual factors (risk, relationships and resources).Conclusion: Decision-making in dementia is complex and influenced by many factors beyond cognitive impairment alone. This review indicates that decision-making in dementia takes place through decisional styles, determined by unique levels of involvement from people living with dementia and their carers.

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.

The Adaptation and Feasibility of Narrative Enhancement and Cognitive Therapy (NECT) for Late-Onset Psychosis.

The aim of this study is to adapt and feasibility test the narrative component of Narrative Enhancement and Cognitive Therapy (NECT) for late-onset psychosis. This study followed the development and feasibility phases of the Medical Research Council framework. The original NECT intervention was adapted based on consultations with service users, experts, and clinicians. The evaluation of the feasibility test of the adapted intervention was guided by Orsmond and Cohn (Occup Particip Health 35(3):169-177, 2015)'s model for feasibility studies. The final adaptations consist of language, readability, and delivery. The adapted intervention was tested for feasibility and acceptability with one group of five patients recruited from a National Health Service (NHS) Trust in UK Results were mixed in participant outcomes and a likelihood of acceptability of the intervention. This indicates the need for a larger scale feasibility test to explore the identified benefits and challenges of implementing NECT in NHS or community settings for late-onset psychosis.

Cognitive mediation in people with dementia: Development, structural, and construct validity of the first dementia-specific measure.

OBJECTIVES: Anxiety and depression are common and deleterious comorbidities in people living with dementia (PLWD). Cognitive behavioural therapy (CBT) is one of the few promising treatments; however, it is unclear whether PLWD have the necessary prerequisites to engage in this. Having an understanding of cognitive mediation, that a thought mediates the relationship between an antecedent event and its emotional consequence, is key for engaging with CBT and is also a critical component of emotion regulation. There are no measures of this construct validated for PLWD. This study aims to adapt and validate an existing measure for this population. A secondary aim is to assess its applicability in older adults (OA) without a recognised neurocognitive impairment. METHODS: A measure of cognitive mediation was adapted via expert and service user consultation for use in PLWD. A total of 102 PLWD and 77 OA without neurocognitive impairments completed the adapted measure along with two measures of emotion recognition and reasoning. Factor structure was examined separately in both samples, and the measure reduced, with convergent validity assessed. RESULTS: A final measure of 10 items (named the CM-Dem) was subject to factor analysis yielding a single factor solution. The measure showed good psychometric properties in PLWD, including good model fit, high internal consistency, inter-rater reliability, and moderate convergent validity with related constructs. In contrast, poor validity was found in OA, especially a lack of convergent validity. CONCLUSIONS: The CM-Dem has clinical and research utility as a measure of cognitive mediation in PLWD, but less so in OA.

Factors related to sense of competence in family caregivers of people living with dementia in the community: a narrative synthesis.

ABSTRACTObjectives:Sense of competence defines a caregiver's feeling of being capable to manage the caregiving task and is an important clinical concept in the caregiving literature. The aim of this review was to identify the factors, both positive and negative, associated with a caregiver's perception of their sense of competence. DESIGN: A systematic review of the literature was conducted, retrieving both quantitative and qualitative papers from databases PsycINFO, CINAHL, EMBASE, and Medline. A quality assessment was conducted using the STROBE and CASP checklists, and the quality rating informed the inclusion of papers ensuring the evidence was robust. Narrative synthesis was employed to synthesize the findings and to generate an updated conceptual model of sense of competence. RESULTS: Seventeen papers were included in the review, all of which were moderate to high quality. These included 13 quantitative, three mixed-methods and one qualitative study. Factors associated with sense of competence included: behavioral and psychological symptoms of dementia (BPSD), caregiver depression, gratitude, and the ability to find meaning in caregiving. CONCLUSIONS: The results of this review demonstrate that both positive and negative aspects of caring are associated with caregiver sense of competence. Positive and negative aspects of caregiving act in tandem to influence caregiver perception of their competence. The proposed model of sense of competence aims to guide future research and clinical interventions aimed at improving this domain but requires further testing, as due to the observational nature of the include papers, the direction of causality could not be inferred.

Facilitators and barriers to co-research by people with dementia and academic researchers: Findings from a qualitative study.

BACKGROUND: Public and patient involvement (PPI) is now established in dementia research. Barriers and facilitators to engagement from family carers and people in early stages of dementia have been explored. However, specific barriers and facilitators to co-research with people with dementia have not previously been investigated. OBJECTIVE: To discover the facilitators of, and barriers to, involving people with dementia as co-researchers, from the perspectives of people with dementia, gatekeepers (family caregivers, ethics committee members, service providers) and researchers. DESIGN: Thematic analysis of data from individual interviews about the co-research experience. RESULTS: Four themes emerged from interviews with 19 participants (five people with dementia): "getting one's head round it" (assumptions about research and dementia; different forms of language); practicalities (eg transport; accessibility of communication); "this feeling of safety" (perceptions of danger, protectiveness and opportunities for building trust); and motivations ("making a difference" and "keeping doing"). CONCLUSIONS: Findings both replicate and extend previous knowledge on PPI in dementia. Cognitive capacity of potential co-researchers with dementia is only a part of the picture, with attitudes and expectations of researchers, gatekeepers and people with dementia also forming barriers. Researcher education, adequate resourcing, and both creativity and flexibility are needed to support recruitment of co-researchers with dementia and to enable meaningful co-research.

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.

Psychosocial interventions for people with dementia: a synthesis of systematic reviews.

OBJECTIVES: Over the last 10 years there has been a multitude of studies of psychosocial interventions for people with dementia. However, clinical services face a dilemma about which intervention should be introduced into clinical practice because of the inconsistency in some of the findings between different studies and the differences in the study qualities and trustworthiness of evidence. There was a need to provide a comprehensive summary of the best evidence to illustrate what works. METHODS: A review of the systematic reviews of psychosocial interventions in dementia published between January 2010 and February 2016 was conducted. RESULTS: Twenty-two reviews (8 physical, 7 cognitive, 1 physical/cognitive and 6 other psychosocial interventions) with a total of 197 unique studies met the inclusion criteria. Both medium to longer-term multi-component exercise of moderate to high intensity, and, group cognitive stimulation consistently show benefits. There is not sufficient evidence to determine whether psychological or social interventions might improve either mood or behaviour due to the heterogeneity of the studies and interventions included in the reviews. CONCLUSION: There is good evidence that multi-component exercise with sufficient intensity improves global physical and cognitive functions and activities of daily living skills. There is also good evidence that group-based cognitive stimulation improves cognitive functions, social interaction and quality of life. This synthesis also highlights the potential importance of group activities to improve social integration for people with dementia. Future research should investigate longer-term specific outcomes, consider the severity and types of dementia, and investigate mechanisms of change.

Validity and Usefulness of the Hospital Anxiety and Depression Scale in Carers of People with Dementia: Evidence from Confirmatory Factor Analysis, Concurrent Validity, and Measurement Invariance in a Large Sample.

OBJECTIVE: The Hospital Anxiety and Depression Scale (HADS) is a self-report measure of anxiety and depression. It is recommended for clinical assessment and has been used as the primary outcome in large clinical trials with carers of people with dementia. Its validity and utility have never been examined in this population. The current study addresses this. METHODS: In a secondary analysis of baseline data from a recent intervention trial (N = 284) with cross-validation in baseline data from a second trial (N = 230), the authors used confirmatory factor analysis to test whether a one-, two-, or three-factor structure best fit the data and used indices of model misspecification to respecify. Internal consistency, concurrent validity of obtained factors, and measurement invariance across gender, age, kinship, and cohabitation status were assessed. RESULTS: A three-factor structure best fit the data. Removal of one item improved model fit. The factors showed good internal consistency and high levels of concurrent validity. Measurement invariance was adequate across gender and kinship but not age or cohabitation status. Results were replicated in the cross-validation sample, enhancing reliability. CONCLUSION: In this group the HADS measured three factors; depression, anxiety, and negative affectivity. The depression scale can be used as originally intended, supporting results of large clinical trials. The HADS does not validly measure distress or anxiety. Consequently, clinical practice recommendations could be revisited, and future research trials should not use HADS anxiety or distress as outcomes. Researchers should pay attention to measurement invariance when using HADS to compare carer subgroups.

The contribution of caregiver psychosocial factors to distress associated with behavioural and psychological symptoms in dementia.

OBJECTIVE: The objective of the study is to examine caregiver factors as predictors of BPSD-related distress and their potential mechanisms. METHOD: Informal caregivers of people with dementia (n = 157) recruited from 28 community mental health teams in six NHS Trusts across England completed questionnaires regarding psychosocial factors (relationship quality, competence, guilt, health-related quality of life in the caregiver and person with dementia, reactivity to behavioural and psychological symptoms in dementia [BPSD] and burden) and frequency of BPSD. Analyses of BPSD-related distress include hierarchical multiple regression, mediation, moderation and path analysis. RESULTS: Caregiver psychosocial factors explained 56% of the variance in BPSD-related distress. After controlling for these factors, frequency of BPSD was not a significant predictor of BPSD-related distress. Caregiver reactivity to BPSD, burden, competence and relationship quality directly influenced BPSD-related distress. Guilt influenced distress indirectly via competence, burden and reactivity to BPSD. The final model accounted for 41% of the variance in BPSD-related distress and achieved a good fit to the data (χ2 = 23.920, df = 19, p = 0.199). CONCLUSIONS: Caregiver psychosocial factors including sense of competence, guilt, burden and reactivity to BPSD contribute to BPSD-related distress. Tailored interventions for managing behaviour problems in family settings could focus on these factors associated with BPSD-related distress to minimise distress in families. Copyright © 2016 John Wiley & Sons, Ltd.

Limited validity of the Hospital Anxiety and Depression Scale (HADS) in dementia: evidence from a confirmatory factor analysis.

OBJECTIVES: The Hospital Anxiety and Depression Scale (HADS) is a well-validated, self-report measure of both anxiety and depression. It is frequently used with people with dementia. However, its structural validity has never been examined in this population. The current study used confirmatory factor analysis (CFA) to assess this. METHODS: Baseline data from two intervention studies for people with mild to moderate dementia were combined (N = 268). CFA was used to test whether a one, two or three factor structure best fit the data. Indices of model misspecification were examined to test for poor quality items, and models re-specified accordingly. Finally, measurement invariance across gender and different levels of cognitive impairment was assessed. RESULTS: A one-factor structure did not fit the data. Two and three factor structures fitted the data equally well. Model fit was improved by removal of two items. Measurement invariance was adequate across gender, but poor across groups with differing levels of cognitive impairment. CONCLUSION: The HADS is acceptable and feasible but difficult to interpret in a dementia population. We suggest that it should be interpreted as measuring two separate factors of anxiety and depression and not one 'distress' factor. However, two items may need to be removed, affecting cut-off scores. Poor measurement invariance means the HADS may not be a good tool for measuring differences in anxiety and depression between those with mild and those with moderate cognitive impairment. Copyright © 2016 John Wiley & Sons, Ltd.

Shifting dementia discourses from deficit to active citizenship.

Within western cultures, portrayals of dementia as 'a living death' are being challenged by people living with the diagnosis. Yet dementia remains one of the most feared conditions. The sociological lens of citizenship provides a conceptual framework for reviewing the role of society and culture in repositioning dementia away from deficit to a discourse of agency and interdependence. Awareness of cognitive change, and engaging with the diagnostic process, moves people into a transitional, or 'liminal' state of uncertainty. They are no longer able to return to their previous status, but may resist the unwanted status of 'person with dementia'. Drawing on qualitative studies on social participation by people with dementia, we suggest that whether people are able to move beyond the liminal phase depends on acceptance of the diagnosis, social capital, personal and cultural beliefs, the responses of others and comorbidities. Some people publicly embrace a new identity whereas others withdraw, or are withdrawn, from society to live in the shadow of the fourth age. We suggest narratives of deficit fail to reflect the agency people with dementia can enact to shape their social worlds in ways which enable them to establish post-liminal citizen roles. (A Virtual Abstract of this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA).