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.

Symptom-based staging for logopenic variant primary progressive aphasia.

BACKGROUND AND PURPOSE: Logopenic variant primary progressive aphasia (lvPPA) is a major variant presentation of Alzheimer's disease (AD) that signals the importance of communication dysfunction across AD phenotypes. A clinical staging system is lacking for the evolution of AD-associated communication difficulties that could guide diagnosis and care planning. Our aim was to create a symptom-based staging scheme for lvPPA, identifying functional milestones relevant to the broader AD spectrum. METHODS: An international lvPPA caregiver cohort was surveyed on symptom development under an 'exploratory' survey (34 UK caregivers). Feedback from this survey informed the development of a 'consolidation' survey (27 UK, 10 Australian caregivers) in which caregivers were presented with six provisional clinical stages and feedback was analysed using a mixed-methods approach. RESULTS: Six clinical stages were endorsed. Early symptoms included word-finding difficulty, with loss of message comprehension and speech intelligibility signalling later-stage progression. Additionally, problems with hearing in noise, memory and route-finding were prominent early non-verbal symptoms. 'Milestone' symptoms were identified that anticipate daily-life functional transitions and care needs. CONCLUSIONS: This work introduces a new symptom-based staging scheme for lvPPA, and highlights milestone symptoms that could inform future clinical scales for anticipating and managing communication dysfunction across the AD spectrum.

Differences in psychological treatment outcomes by ethnicity and gender: an analysis of individual patient data.

PURPOSE: There are discrepancies in mental health treatment outcomes between ethnic groups, which may differ between genders. NHS Talking Therapies for anxiety and depression provide evidence-based psychological therapies for common mental disorders. This study examines the intersection between ethnicity and gender as factors associated with psychological treatment outcomes. Aims were to explore by gender: (1) differences in psychological treatment outcomes for minoritized ethnic people compared to White-British people, (2) whether differences are observed when controlling for clinical and socio-demographic factors associated with outcomes, and (3) whether organization-level factors moderate differences in outcomes between ethnic groups. METHODS: Patient data from eight NHS Talking Therapies for anxiety and depression services (n = 98,063) was used to explore associations between ethnicity and outcomes, using logistic regression. Stratified subsamples were used to separately explore factors associated with outcomes for males and females. RESULTS: In adjusted analyses, Asian (OR = 0.82 [95% CI 0.78; 0.87], p < .001, 'Other' (OR = 0.79 [95%CI 0.72-0.87], p < .001) and White-other (0.93 [95%CI 0.89-0.97], p < .001) ethnic groups were less likely to reliably recover than White-British people. Asian (OR = 1.48 [95% CI 1.35-1.62], p < .001), Mixed (OR = 1.18 [95% CI 1.05-1.34], p = .008), 'Other' (OR = 1.60 [95% CI 1.38-1.84], p < .001) and White-other (OR = 1.18 [95% CI 1.09-1.28], p < .001) groups were more likely to experience a reliable deterioration in symptoms. Poorer outcomes for these groups were consistent across genders. There was some evidence of interactions between ethnic groups and organization-level factors impacting outcomes, but findings were limited. CONCLUSIONS: Across genders, Asian, 'Other' and White-other groups experienced worse treatment outcomes across several measures in adjusted models. Reducing waiting times or offering more treatment sessions might lead to increased engagement and reduced drop-out for some patient groups.

Grief and loss in people living with dementia: a review and metasynthesis of qualitative studies.

OBJECTIVES: This review seeks to synthesise qualitative studies that focus on the experience of grief and loss in people living with dementia. METHODS: Included studies were quality appraised, synthesised and analysed using inductive thematic analysis. RESULTS: 19 studies were selected for inclusion in the final review and metasynthesis, including 486 participants (115 participants living with dementia, 152 family carers, 219 professionals). Five key dimensions of grief in people living with dementia were identified during the analysis process: grieving for the person I used to be, grieving for how others see me, grieving for the person I will become, grieving for those who have died and what helps me with my grief. CONCLUSION: It is evident that people living with dementia can experience grief related to a range of previous, current and anticipated losses. Many of the studies included in this review did not directly include people living with dementia in their research and did not ask participants directly about their experience of grief and loss. As grief is a highly personal and individual experience, further research addressing the experience of grief that directly includes participants living with dementia is required, in order to improve awareness of grief-related needs and to develop and deliver support to meet these needs.

Psychological therapies for depression and cardiovascular risk: evidence from national healthcare records in England.

AIMS: People with depression are up to 72% more at risk to develop cardiovascular disease (CVD) in their lifetime. Evidence-based psychotherapies are first-line interventions for the treatment of depression and are delivered nationally in England through the National Health Service via the Improving Access to Psychological Therapy (IAPT) primary care programme. It is currently unknown whether positive therapy outcomes may be associated with cardiovascular risk reduction. This study aimed to examine the association between psychotherapy outcomes for depression and incident CVD. METHODS AND RESULTS: A cohort of 636 955 individuals who have completed a course of psychotherapy was built from linked electronic healthcare record databases of national coverage in England: the national IAPT database, the Hospital Episode Statistics (HES) database, and the HES-ONS (Office of National Statistics) mortality database. Multivariable Cox models adjusting for clinical and demographic covariates were run to estimate the association between reliable improvement from depression and the risk of subsequent incidence of cardiovascular events. After a median follow-up of 3.1 years, reliable improvement from depression symptoms was associated with a lower risk of new onset of any CVD [hazard ratio (HR): 0.88, 95% confidence interval (CI): 0.86, 0.89], coronary heart disease (HR: 0.89, 95% CI: 0.86, 0.92), stroke (HR: 0.88, 95% CI: 0.83, 0.94), and all-cause mortality (HR: 0.81, 95% CI: 0.78, 0.84). This association was stronger in the under 60 compared with the over 60 for all outcomes. Results were confirmed in sensitivity analyses. CONCLUSION: Management of depression through psychological interventions may be associated with reduced risk of CVD. More research is needed to understand the causality of these associations.

"I Want to Do Something" - Exploring What Makes Activities Meaningful for Community-Dwelling People Living With Dementia: A Focused Ethnographic Study.

Supporting ageing in place, quality of life, and activity engagement are public health priorities for people with dementia. The importance of maintaining opportunities for meaningful activities has been widely acknowledged for those with dementia in long-term care, but little is known about what makes activities meaningful for, and how they are experienced by, people with different types of dementia in their own homes. This study used focussed ethnographic methods to explore the motivations and meanings of everyday activity engagement within the homes of 10 people with memory-led Alzheimer's disease and 10 people with posterior cortical atrophy. While participants' interactions with their everyday environments were challenged by their diagnoses, they were all finding ways to continue meaning-making via various activities. The main findings are encapsulated in three themes: (1) The fun and the function of activities; (2) Reciprocities of care, and (3) The constitution and continuity of (a changing) self. Ongoing engagement with both fun and functional activities offered participants living with different dementias opportunities to connect with others, to offer care and support (as well as receive it), and to maintain a sense of self and identity. Implications are discussed regarding the development and delivery of tailored interventions and support to enable continued engagement in meaningful activities for people with different types of dementia living in the community.

Effectiveness of psychological therapies for depression and anxiety in atypical dementia.

INTRODUCTION: People with dementia may benefit from psychological therapies for depression or anxiety, but evidence of their effectiveness in atypical dementia is limited. METHODS: Using electronic health-care records of > 2 million people who attended psychological therapy services in England between 2012 and 2019, we examined pre-post therapy symptom changes and compared therapy outcomes among 523 people with atypical dementia, a matched cohort without dementia, and 1157 people with typical dementia. RESULTS: People with atypical dementia experienced reductions in depression (Cohen d = -0.92 [-1.05 to -0.79]) and anxiety (d = -0.85 [-0.98 to -0.73]) symptoms. They had similar odds of improvement than people with typical dementia (odds ratio [OR] = 1.07, 95% confidence interval [CI]: 0.85 to 1.34), but lower odds than people living without dementia (OR = 0.70, 95% CI: 0.53 to 0.91). Reasons for discharge were similar between all groups. DISCUSSION: People with atypical dementia may benefit from primary care psychological therapies, but further research is needed to explore necessary adaptations. HIGHLIGHTS: Talking therapies for depression and anxiety may be beneficial for people with atypical dementia. Being younger and having a lower socioeconomic background are associated with poorer outcomes. Receiving more treatment sessions and shorter waiting times are associated with better outcomes.

Symptom-led staging for semantic and non-fluent/agrammatic variants of primary progressive aphasia.

INTRODUCTION: Here we set out to create a symptom-led staging system for the canonical semantic and non-fluent/agrammatic variants of primary progressive aphasia (PPA), which present unique diagnostic and management challenges not well captured by functional scales developed for Alzheimer's disease and other dementias. METHODS: An international PPA caregiver cohort was surveyed on symptom development under six provisional clinical stages and feedback was analyzed using a mixed-methods sequential explanatory design. RESULTS: Both PPA syndromes were characterized by initial communication dysfunction and non-verbal behavioral changes, with increasing syndromic convergence and functional dependency at later stages. Milestone symptoms were distilled to create a prototypical progression and severity scale of functional impairment: the PPA Progression Planning Aid ("PPA-Squared"). DISCUSSION: This work introduces a symptom-led staging scheme and functional scale for semantic and non-fluent/agrammatic variants of PPA. Our findings have implications for diagnostic and care pathway guidelines, trial design, and personalized prognosis and treatment for PPA. HIGHLIGHTS: We introduce new symptom-led perspectives on primary progressive aphasia (PPA). The focus is on non-fluent/agrammatic (nfvPPA) and semantic (svPPA) variants. Foregrounding of early and non-verbal features of PPA and clinical trajectories is featured. We introduce a symptom-led staging scheme for PPA. We propose a prototype for a functional impairment scale, the PPA Progression Planning Aid.

Genetic risk for Huntington Disease and reproductive decision-making: A systematic review.

Huntington Disease (HD) is an incurable autosomal dominant single gene neurodegenerative disorder. Typical onset is between 30 and 40 years and characterised by motor difficulties, cognitive impairment, and behavioural and personality changes. The availability of reproductive testing means that affected and at-risk individuals can make reproductive decisions with genetic risk in mind. We aimed to summarise the literature on reproductive decision-making in the context of HD risk in terms of outcomes and the subjective experiences of at-risk individuals. Five databases were searched. Findings were synthesised using Framework analysis to identify common factors across results of quantitative and qualitative studies. Twenty five studies met inclusion criteria. Framework analysis identified the following key areas: 'The relationship between reproductive intentions and HD genetic risk', 'Views on assistive options', 'Complexity and challenges in reproductive decision-making', 'Actual reproductive outcomes', and 'Other factors influencing reproductive decision-making'. Quality of included studies was mixed. Reproductive decision making in the context of HD risk was found to be a complex and emotionally challenging process. Further research is required into reproductive decision-making and outcomes among those not utilising assistive options, and in developing a model of reproductive decision-making in HD.

The association between trajectories of change in social functioning and psychological treatment outcome in university students: a growth mixture model analysis.

BACKGROUND: The transition to university and resultant social support network disruption can be detrimental to the mental health of university students. As the need for mental health support is becoming increasingly prevalent in students, identification of factors associated with poorer outcomes is a priority. Changes in social functioning have a bi-directional relationship with mental health, however it is not clear how such measures may be related to effectiveness of psychological treatments. METHODS: Growth mixture models were estimated on a sample of 5221 students treated in routine mental health services to identify different trajectories of change in self-rated impairment in social leisure activities and close relationships during the course of treatment. Multinomial regression explored associations between trajectory classes and treatment outcomes. RESULTS: Five trajectory classes were identified for social leisure activity impairment while three classes were identified for close relationship impairment. In both measures most students remained mildly impaired. Other trajectories included severe impairment with limited improvement, severe impairment with delayed improvement, and, in social leisure activities only, rapid improvement, and deterioration. Trajectories of improvement were associated with positive treatment outcomes while trajectories of worsening or stable severe impairment were associated with negative treatment outcomes. CONCLUSIONS: Changes in social functioning impairment are associated with psychological treatment outcomes in students, suggesting that these changes may be associated with treatment effectiveness as well as recovery experiences. Future research should seek to establish whether a causal link exists to understand whether integrating social support within psychological treatment may bring additional benefit for students.

Understanding the psychological therapy treatment outcomes for young adults who are not in education, employment, or training (NEET), moderators of outcomes, and what might be done to improve them.

BACKGROUND: To determine: whether young adults (aged 18-24) not in education, employment or training (NEET) have different psychological treatment outcomes to other young adults; any socio-demographic or treatment-related moderators of differential outcomes; and whether service-level changes are associated with better outcomes for those who are NEET. METHODS: A cohort was formed of 20 293 young adults treated with psychological therapies in eight Improving Access to Psychological Therapies services. Pre-treatment characteristics, outcomes, and moderators of differential outcomes were compared for those who were and were not NEET. Associations between outcomes and the following were assessed for those that were NEET: missing fewer sessions, attending more sessions, having a recorded diagnosis, and waiting fewer days between referral and starting treatment. RESULTS: Those who were NEET had worse outcomes: odds ratio (OR) [95% confidence interval (CI)] for reliable recovery = 0.68 (0.63-0.74), for deterioration = 1.41 (1.25-1.60), and for attrition = 1.31 (1.19-1.43). Ethnic minority participants that were NEET had better outcomes than those that were White and NEET. Living in deprived areas was associated with worse outcomes. The intensity of treatment (high or low) did not moderate outcomes, but having more sessions was associated with improved outcomes for those that were NEET: odds (per one-session increase) of reliable recovery = 1.10 (1.08-1.12), deterioration = 0.94 (0.91-0.98), and attrition = 0.68 (0.66-0.71). CONCLUSIONS: Earlier treatment, supporting those that are NEET to attend sessions, and in particular, offering them more sessions before ending treatment might be effective in improving clinical outcomes. Additional support when working with White young adults that are NEET and those in more deprived areas may also be important.

Measurement invariance of the PHQ-9 and GAD-7 across males and females seeking treatment for common mental health disorders.

BACKGROUND: The nine-item Patient Health Questionnaire (PHQ-9) and the seven-item Generalised Anxiety Disorder scale (GAD-7) scales are routinely used in research and clinical practice. Whilst measurement invariance of these measures across gender has been demonstrated individually in general population studies and clinical samples, less is known about invariance of the distinct but correlated latent factors ('depression' and 'anxiety'). The current study assessed measurement invariance of these constructs across males and females seeking treatment for common mental health disorders. METHODS: Data were provided from eight psychological treatment services in London, England. Data from initial assessments with the services where individual items on the PHQ-9 and GAD-7 were available were included in analyses. Measurement invariance was explored across self-identified genders, with 'male' and 'female' categories available in the dataset. Sensitivity analyses were conducted using propensity score matching on sociodemographic and clinical variables. RESULTS: Data were available for 165,872 patients (110,833 females, 55,039 males). There was evidence of measurement invariance between males and females in both the full sample and a propensity score matched sample (n = 46,249 in each group). CONCLUSIONS: Measurement invariance of the correlated depression and anxiety factors of PHQ-9 and GAD-7 were indicated in this sample of individuals seeking psychological treatment for CMHDs. These results support the use of these measures in routine clinical practice for both males and females. This is of particular importance for assessing the prevalence of clinically significant levels of symptoms as well as comparing treatment outcomes across genders.

Situating support for people living with rarer forms of dementia.

BACKGROUND: Awareness of a multitude of diseases that can cause neurodegenerative decline and their unique symptom profiles in the dementia care and support sectors remains limited. Obtaining an accurate diagnosis and post-diagnostic care and support is a challenge for many people and their families. As part of a larger study examining multi-component forms of support for people living with rarer dementias, the aim of this present study was to examine how rare dementia was situated within the complex social groupings, their organization and embedded discursive constructions that broadly form dementia care and support delivery. METHODS: Adopting a situational analysis approach, we undertook an examination of public documents and organizational websites within the support sector for people living with dementia in Canada, England, and Wales. We also surveyed professionals to further explore the situation at the point of care and support delivery. Consistent with our approach, data collection and analysis occurred concurrently including the development of a series of analytic maps. RESULTS: Recognizing the complexities within the situation, our findings provided new insights on the situated structures for support action and the discursive representations that illuminate both the limitations of the current support landscape and possibilities for a more flexible and tailored rare dementia support. Alongside, the predominant universal versus tailored support positionings within our data reinforced the complexity from which a promising new social space for people living with rarer dementias is being cultivated. CONCLUSIONS: The social worlds engaged in supportive action with people living with rare dementia are less visible within the shadow of a universally constructed dementia support milieu and appear to be negotiated within this powerful arena. However, their evolving organization and discursive constructions point to an emerging new social space for people living with rarer conditions.

'I have never bounced back': resilience and living with dementia.

OBJECTIVE: This work responds to the limited research about resilience when living with dementia and develops a conceptual model to inform service development and healthcare practices for this population. METHODS: An iterative process of theory building across four phases of activity (scoping review n = 9 studies), stakeholder engagement (n = 7), interviews (n = 11) generated a combined sample of 87 people living with dementia and their carers, including those affected by rare dementias to explore their lived experiences. An existing framework of resilience developed in other populations served as the starting point to analyse and synthesise the findings, inspiring a new conceptual model of resilience unique to the experience of living with dementia. RESULTS: The synthesis suggests resilience encompasses the daily struggles of living with a dementia; people are not flourishing, thriving or 'bouncing back', but are managing and adapting under pressure and stress. The conceptual model suggests resilience may be achieved through the collective and collaborative role of psychological strengths, practical approaches to adapting to life with dementia, continuing with hobbies, interests and activities, strong relationships with family and friends, peer support and education, participating in community activities and support from healthcare professionals. Most of these themes are not reflected in resilience outcome measures. CONCLUSIONS: Practitioners adopting a strengths-based approach utilising the conceptual model at the point of diagnosis and post-diagnosis support may help individuals achieve resilience through appropriately tailored services and support. This 'resilience practice' could also extend to other degenerative or debilitating chronic conditions a person faces in their life course.

'The oxygen of shared experience': exploring social support processes within peer support groups for carers of people with non-memory-led and inherited dementias.

OBJECTIVES: To explore support processes and behaviours taking place during online peer support groups for family carers of people living with rare, non-memory-led and inherited dementias (PLWRD). METHODS: Twenty-five family carers of PLWRD participated in a series of ongoing online peer support groups on the theme of 'Independence and Identity'. Transcripts from 16 sessions were analysed using qualitative directed content analysis with a coding framework informed by Cutrona & Suhr's (2004) Social Support Behaviour Code (SSBC). RESULTS: Most of the social support behaviours outlined in the SSBC were identified within the sessions, along with two novel social support categories - 'Experiential Support' and 'Community Support' - and novel support behaviours including 'Advocacy and Collective Action' and 'Uses Humour'. The SSBC code 'Relationship' appeared to be of central importance. CONCLUSIONS: This study sheds light on the unique challenges of the caring context for those affected by non-memory-led and inherited dementias and the significant contributions carers can offer to, and receive from, peers in similar situations. It highlights the importance of services which recognise the value of the informational and emotional expertise of carers of PLWRD and encourages the continued development and delivery of tailored support for these populations.

A systematic review and psychometric evaluation of resilience measurement scales for people living with dementia and their carers.

Psychometrically sound resilience outcome measures are essential to establish how health and care services or interventions can enhance the resilience of people living with dementia (PLWD) and their carers. This paper systematically reviews the literature to identify studies that administered a resilience measurement scale with PLWD and/or their carers and examines the psychometric properties of these measures. Electronic abstract databases and the internet were searched, and an international network contacted to identify peer-reviewed journal articles. Two authors independently extracted data. They critically reviewed the measurement properties from the available psychometric data in the studies, using a standardised checklist adapted for purpose. Fifty-one studies were included in the final review, which applied nine different resilience measures, eight developed in other populations and one developed for dementia carers in Thailand. None of the measures were developed for use with people living with dementia. The majority of studies (N = 47) focussed on dementia carers, three studies focussed on people living with dementia and one study measured both carers and the person with dementia. All the studies had missing information regarding the psychometric properties of the measures as applied in these two populations. Nineteen studies presented internal consistency data, suggesting seven of the nine measures demonstrate acceptable reliability in these new populations. There was some evidence of construct validity, and twenty-eight studies hypothesised effects a priori (associations with other outcome measure/demographic data/differences in scores between relevant groups) which were partially supported. The other studies were either exploratory or did not specify hypotheses. This limited evidence does not necessarily mean the resilience measure is not suitable, and we encourage future users of resilience measures in these populations to report information to advance knowledge and inform further reviews. All the measures require further psychometric evaluation in both these populations. The conceptual adequacy of the measures as applied in these new populations was questionable. Further research to understand the experience of resilience for people living with dementia and carers could establish the extent current measures -which tend to measure personal strengths -are relevant and comprehensive, or whether further work is required to establish a new resilience outcome measure.

Are students less likely to respond to routinely delivered psychological treatment? A retrospective cohort analysis.

BACKGROUND: Depression and anxiety disorders are increasingly prevalent among university students, making the provision of effective treatment in this population a priority. Whilst campus-based services provide some psychological treatments, many students are treated by routine adult psychological treatment services which have no focus or adaptations to treatment for student populations. We aimed to compare psychological treatment outcomes between university students and young adults (aged 18-25) in employment to explore whether routinely delivered psychological interventions are equally effective for these groups, or whether students report poorer outcomes. METHODS: A retrospective cohort was formed of 19,707 patients treated by eight National Health Service (NHS) Improving Access to Psychological Therapies (IAPT) services in England. Associations between student status (compared to same-age employed adults) and psychological treatment outcomes were explored using logistic regression models. Models were adjusted for important treatment, clinical and demographic characteristics, and propensity score matching was used to explore the robustness of effects. RESULTS: Students and the employed comparison group were similar on baseline characteristics at assessment, but students were less likely to reliably recover (OR = 0.90 [95% CI = 0.83;0.96]) and reliably improve (OR = 0.91 [95% CI = 0.84;0.98]) by the end of treatment in fully adjusted models. Students and the employed group did not differ regarding the likelihood of deterioration (OR = 0.89 [95% CI = 0.78;1.02]) or treatment dropout (OR = 1.01 [95% CI = 0.93;1.11]). CONCLUSIONS: Students appear at risk of poorer outcomes compared to employed younger adults when treated in routine psychological treatment services. Students may require additional support and treatment adaptations that account for student-specific stressors as this might improve psychological treatment outcomes.

Exploring experiences and needs of spousal carers of people with behavioural variant frontotemporal dementia (bvFTD) including those with familial FTD (fFTD): a qualitative study.

INTRODUCTION: Carers of people with frontotemporal dementia (FTD) experience greater challenges than carers of people with other dementias due to the younger age of onset and the challenging presentation of symptoms. The aim of the present study was to explore experiences of spousal carers of people with bvFTD, including those with the familial form of the disease (fFTD). METHOD: Fourteen qualitative interviews were analysed using an inductive approach to Thematic Analysis to understand experiences of spousal carers of people with bvFTD including those with fFTD. RESULTS: Five main themes were identified including: a) The "Constant Battle" - A journey toward an FTD diagnosis, b) Shock, Relief and Fear - Challenges persist post diagnosis, c) The "Life Altering" impact - The loss of the spousal relationship and shifting roles, d) Adapting, Managing Symptoms and Receiving Carer Support, e) Lack of General Knowledge - Barriers to support. CONCLUSIONS: Healthcare professionals should be educated on the initial presentations of FTD, to enable carers and families receive timely diagnosis and appropriate support. Future research should investigate the impact of fFTD on carers and families, to explore positive or meaningful experiences in caring, as well as theory-driven research to identify helpful coping strategies for carers of people with FTD.

Communication training programmes for informal caregivers of people living with dementia: A systematic review.

AIMS AND OBJECTIVES: Current research suggests that communication training programmes for caregivers of people living with dementia can benefit both parties by improving communication, quality of life and stress. Previous reviews in this area focus on mixed samples of formal and informal caregivers. This review aimed to evaluate current research for trainings specifically for informal caregivers, including the research quality and the key training components. DESIGN AND METHODS: The review followed the PRISMA research reporting checklist. The electronic databases CINAHL, Embase, Medline and Psychinfo and reference lists of included literature were searched for studies relevant to the aims. Of the 45 identified studies, 36 were excluded based on pre-specified criteria. Nine studies were included in the final review and subject to quality appraisal using the Qualsyst tool. RESULTS: The included studies' programmes averaged 5 to 6 hours in length over four to five sessions, were mostly face to face in both group and individual settings and were developed using various communication and psychological theories. Studies demonstrated variable quality and outcomes, making it difficult to identify optimal components. However, careful consideration of different factors enabled some suggestions for training dose, delivery method, content and outcomes to measure. CONCLUSIONS: Communication training programmes can benefit people living with dementia and their informal caregivers in outcomes such as communication skills and quality of life. Suggestions are made on the training components that optimise these benefits. RELEVANCE TO CLINICAL PRACTICE: Given the clear benefits on outcomes such as quality of life, there is a need for communication trainings to be offered in clinical contexts. However, given the limited pool of variable quality research and lack of accessible manuals, it is unlikely that this is the case. Consolidating and widening the evidence through further research is essential in making these trainings more widely available.

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.