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.

A systematic review on the impact of financial insecurity on the physical and psychological well-being for people living with terminal illness.

BACKGROUND: People living with terminal illness are at higher risk of experiencing financial insecurity. The variance in definitions of financial insecurity, in addition to its impact on the well-being of this population has not yet been systematically analysed. AIM: To understand the definition, prevalence and impact of financial insecurity on the physical and psychological well-being of people living with terminal illness. DESIGN: A systematic review with a narrative synthesis (prospectively registered; CRD42023404516). DATA SOURCES: Medline, Embase, CINAHL, AMED, PsycINFO, ProQuest Central and Cochrane Central Register of Controlled Trials, from inception to May 2023. Included studies had to measure or describe the impact of financial insecurity on an aspect of participants' physical or mental well-being. Study quality was assessed using the Hawker tool. RESULTS: A total of 26 studies were included in the review. Financial insecurity was defined using many different definitions and terminology. Out of 4824 participants, 1126 (23%) reported experiencing high levels of financial insecurity. Nine studies reported 21 unique analyses across three domains of physical well-being. Out of those 21 analyses, 10 (48%) reported a negative result (an increase in financial insecurity was reported with a decrease in physical well-being). Twenty-one studies reported 51 unique analyses across nine domains of psychological well-being. Out of these analyses, 35 (69%) reported a negative result (an increase in financial insecurity was reported with a decrease in psychological well-being). CONCLUSIONS: People living with terminal illness require support with their financial situation to ensure their well-being is not negatively impacted by financial insecurity.

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.

Grief in family carers of people living with dementia: A systematic review.

OBJECTIVES: Grief research in family carers of people with dementia has increased. We aimed to report the prevalence of pre-death and post-death grief and to synthesize associated factors and the relationship between pre-death factors and post-death grief and services used to manage grief. DESIGN: (Prospero protocol: CRD42020165071) We systematically reviewed literature from PsycINFO, MEDLINE, CINAHL, and ASSIA until April 2020. Effectiveness of intervention data and studies not written in English were excluded; qualitative studies were additionally excluded during study selection. Study quality was assessed using the Mixed Methods Appraisal Tool. Evidence was narratively summarized. PARTICIPANTS: Family non-paid carers of somebody with any dementia type. MEASUREMENTS: Validated measures of pre-death and/or post-death grief. RESULTS: We included quantitative data from 55 studies (44 rated as high quality). Most included solely spouse or adult child carers. Forty-one studies reported pre-death grief, 12 post-death grief, and 6 service use; eight were longitudinal. 17% met the Prolonged Grief Disorder criteria pre-death (n = 1) and 6-26% (n = 4) of participants met the Complicated Grief criteria post-death. Being a spouse, less educated, caring for somebody with advanced dementia, and greater burden and depression were associated with higher pre-death grief. Lower education level and depression were predictive of higher post-death grief. Pre-death factors found to influence post-death grief were grief and depression. Limited service use evidence was reported. CONCLUSION: Awareness of characteristics which increase the likelihood of higher grief can help identify those in need of support. Future research should focus on what supports or services are beneficial to grief experiences.

Experiential Avoidance in Advanced Cancer: a Mixed-Methods Systematic Review.

BACKGROUND: People with advanced cancer experience psychological distress due to physical symptoms, functional decline, and a limited prognosis. Difficult thoughts, feelings, and emotions may exacerbate distress and lead to avoidance of these experiences which is sometimes referred to as experiential avoidance (EA). Advanced cancer patients may be more likely to engage in EA especially when no obvious solutions to their problems exist. This study aims to examine the terms used to describe EA, the processes that might indicate EA, associations between EA and psychological distress, and to understand why individuals might engage in EA. METHODS: A mixed-methods review. Literature search of Medline, Embase, Psych INFO, and CINAHL 1980-October 2019. INCLUSION: adults ≥ 18 years; advanced cancer not amenable to cure. EXCLUSION: no measures of EA or psychological distress. Risk of bias and study quality assessed. Evidence of statistical techniques collected. Themes coded, grouped, and developed based on meaning. RESULTS: Nineteen studies identified, 13 quantitative studies and 6 qualitative. The quantitative of which 6 compared early-stage cancers with advanced cancers and examined subscales of EA alongside mood, quality of life, and psychological distress. EA covers a range or terms of which 'avoidant coping' is the commonest. EA is manifest as cognitive, behavioural, and emotional avoidance. A thematic synthesis suggests the function of EA is to protect people from distress, and from confronting or expressing difficult emotions by avoiding communication about cancer, controlling negative information, and maintaining normality and hope and optimism. CONCLUSIONS: EA may be beneficial in the short term to alleviate distress, but in the longer term, it can impair function and limit engagement in life. Greater clinical awareness of the complexity of EA behaviours is needed. Clinicians and researchers should define EA precisely and be aware of the function it may serve in the short and longer term. Future research studies may consider using specific measures of EA as a primary outcome, to assess the impact of psychological interventions such as ACT.

Trust and inclusion during the Covid-19 pandemic: Perspectives from Black and South Asian people living with dementia and their carers in the UK.

INTRODUCTION: People from ethnic minority backgrounds living with dementia are more likely to be diagnosed later and have less access to health and social care support than their White counterparts in the United Kingdom (UK). Covid-19 has exacerbated health inequalities and diminished trust from underserved communities in the government and health services. The wider aim of the study was to explore the impact of covid-19 on Black and South-Asian people living with dementia and their carers as well as exploring the experiences of dementia care. The present paper specifically explores their views on trust and mistrust using an ecological model. METHOD: Semi-structured interviews were conducted with 11 family carers and four people living with dementia from South Asian or Black communities living in the community. Thematic analysis was used to analyse data. DESIGN: An exploratory qualiative design was used. RESULTS: Four main themes were developed exploring trust at the structural, organisational, community and individual level. At the structural level, participants discussed the inequity of Covid-19, some lack of trust in the UK Government and confusion in its messaging, and the anxiety sometimes leading to curtailment of media usage. At the organisational level, there was some evidence of a perceived lack of person-centred and culturally sensitive care from healthcare professionals, as well as concerns around care homes as places of safety. At the neighbourhood community level, participants discussed both a distrust as well as a strengthening of relationships and, at the individual level, factors such as knowledge of services, identity, and faith influenced their experience of the pandemic. CONCLUSIONS: People living with dementia need support at all levels and this study highlights how the pandemic impacted each level. Ways to improve trust in the Government and health professionals alongside culturally adapted health messaging should be explored. Alongside this, an examination of how cultural values and norms may influence help-seeking responses to dementia and increase trust in services may be helpful post-pandemic.

Connecting in place: older adults' experience of online mindfulness therapy during the COVID-19 pandemic.

BACKGROUND: the negative consequences of COVID-19 distancing measures on older adults' mental health and ability to access services have been well documented. Online cognitive behavioural therapy and mindfulness interventions for older adults, carried out during the COVID-19 pandemic, have shown that these interventions are feasible and have potential mental health benefits. However, little research has been carried out on older adults' experiences of engaging with online psychological therapy, and specifically mindfulness therapy. OBJECTIVES: to understand the experience of older adults engaging with online mindfulness therapy during the COVID-19 pandemic. STUDY DESIGN: a qualitative analysis of four community-based focus groups. PARTICIPANTS: thirty-six community dwelling older adults aged between 65 and 85 years were recruited via older adult organisations, charities and the local press. Nineteen percent had long-term physical health conditions, 25% had severe and enduring mental health difficulties and 19% had mild to moderate mental health difficulties. RESULTS: there was a strong sense of group cohesion and community from the participants.Three main themes were identified: reasons for applying, experience of the mindfulness therapy and connecting at home. CONCLUSIONS: the majority of participants were positive about attending a mindfulness group online. This extended to the perceived psychological and social benefits as well as practical considerations. While some participants noted technological hurdles at the beginning of the course, the findings challenge previous studies that suggest older adults are reluctant to engage in online psychological therapies and has important implications for the future provision of psychological therapies to this population.

How best to capture the impact of complementary therapies in palliative care: A systematic review to identify and assess the appropriateness and validity of multi-domain tools.

BACKGROUND: Complementary therapies are widely used in palliative care settings. Qualitative research found that people with advanced disease report a range of physical and psychological benefits from complementary therapies, however evidence of their effectiveness from clinical trials is inconclusive. This may be because trials are limited by use of inappropriate outcome measures. AIMS: To identify tools which capture the impact of massage, reflexology and aromatherapy in people with advanced disease. We (1) identified multi-domain tools used to evaluate these therapies in populations with any chronic health condition and (2) assessed whether tools were valid and psychometrically robust in populations with advanced disease. DESIGN: A two-stage systematic review was conducted using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidelines (PROSPERO: CRD42020161199). DATA SOURCES: Six databases were searched (August 2021). Study methodological quality, tool psychometric properties and evidence quality were assessed. A global comparison score was generated. RESULTS: Stage 1: 66 trials using 40 different multi-domain tools were identified. Stage 2: Of these tools, we identified papers for seven tools regarding development or validation in advanced disease populations. The majority of psychometric data were inconsistent or inconclusive. Data were mostly of low quality due to methodological issues. CONCLUSION: Of the tools identified, 'Functional Assessment of Cancer Therapy - General' appears to be the most suitable alternative tool against COMSIN criteria, for trials of massage, reflexology and aromatherapy in palliative care. Further tool validation is required before firm recommendations can be made. Co-development of a core outcome set could ensure relevant domains are assessed.

Rapid development of a COVID-19 care planning decision-aid for family carers of people living with dementia.

INTRODUCTION: COVID-19 has disproportionately affected people living with dementia and their carers. Its effects on health and social care systems necessitated a rapid-response approach to care planning and decision-making in this population, with reflexivity and responsiveness to changing individual and system needs at its core. Considering this, a decision-aid to help families of persons with dementia was developed. OBJECTIVES: To coproduce with people living with dementia, and the people who care for them, a decision-aid for family carers of people living with dementia, to support decisions during the COVID-19 pandemic and beyond. METHODS: Semi-structured interviews were undertaken in 2020 with: (1) staff from two English national end-of-life and supportive care organizations; and (2) people living with dementia and family carers. Simultaneously, a rapid review of current evidence on making decisions with older people at the end of life was undertaken. Evidence from these inputs was combined to shape the decision-aid through a series of workshops with key stakeholders, including our patient and public involvement group, which consisted of a person living with dementia and family carers; a group of clinical and academic experts and a group of policy and charity leads. RESULTS: The rapid review of existing evidence highlighted the need to consider both process and outcome elements of decision-making and their effects on people living with dementia and their families. The qualitative interviews discussed a wide range of topics, including trust, agency and confusion in making decisions in the context of COVID-19. The decision-aid primarily focussed on care moves, legal matters, carer wellbeing and help-seeking. CONCLUSIONS: Combining different sources and forms of evidence was a robust and systematic process that proved efficient and valuable in creating a novel decision-aid for family carers within the context of COVID-19. The output from this process is an evidence-based practical decision-aid coproduced with people living with dementia, family carers, clinical and academic experts and leading national dementia and palliative care organizations. PATIENT OR PUBLIC CONTRIBUTION: We worked with people living with dementia and family carers and other key stakeholders throughout this study, from study development and design to inclusion in stakeholder workshops and dissemination.

Rapid review of decision-making for place of care and death in older people: lessons for COVID-19.

INTRODUCTION: The coronavirus pandemic (COVID-19) has affected the functioning and capacity of healthcare systems worldwide. COVID-19 has also disproportionately affected older adults. In the context of COVID-19, decision-making surrounding place of care (PoC) and place of death (PoD) in older adults involves significant new challenges. AIMS: To explore key factors that influence PoC and PoD decisions in older adults. A secondary aim was to investigate key factors that influence the process and outcome of these decisions in older adults. To apply findings from current evidence to the context of COVID-19. METHODS: Rapid review of reviews, undertaken using WHO guidance for rapid reviews for the production of actionable evidence. Data extracted was synthesised using narrative synthesis, with thematic analysis and tabulation. RESULTS: 10 papers were included for full data extraction. These papers were published between 2005 and 2020. Papers included discussed actual PoD, as well as preferred. Results were divided into papers that explored the process of decision-making, and those that explored decision-making outcomes. CONCLUSIONS: The process and outcomes of decision-making for older people are affected by many factors-all of which have the potential to influence both patients and caregivers experience of illness and dying. Within the context of COVID-19, such decisions may have to be made rapidly and be reflexive to changing needs of systems and of families and patients.

Defining end of life in dementia: A systematic review.

BACKGROUND: Dementia is a life-limiting condition that affects 50 million people globally. Existing definitions of end of life do not account for the uncertain trajectory of dementia. People living with dementia may live in the advanced stage for several years, or even die before they reach the advanced stage of dementia. AIM: To identify how end of life in people with dementia is measured and conceptualised, and to identify the factors that contribute towards identifying end of life in people with dementia. DESIGN: Systematic review and narrative synthesis. DATA SOURCES: Electronic databases MEDLINE, EMBASE, PsychInfo and CINAHL, were searched in April 2020. Eligible studies included adults with any dementia diagnosis, family carers and healthcare professionals caring for people with dementia and a definition for end of life in dementia. RESULTS: Thirty-three studies met the inclusion criteria. Various cut-off scores from validated tools, estimated prognoses and descriptive definitions were used to define end of life. Most studies used single measure tools which focused on cognition or function. There was no pattern across care settings in how end of life was defined. Healthcare professionals and family carers had difficulty recognising when people with dementia were approaching the end of life. CONCLUSION: End-of-life care and research that focuses only on cognitive and functional decline may fail to recognise the complexities and unmet needs relevant to dementia and end of life. Research and clinical practice should adopt a needs-based approach for people with dementia and not define end of life by stage of disease.

Emotional disclosure in palliative care: A scoping review of intervention characteristics and implementation factors.

BACKGROUND: Emotional disclosure is the therapeutic expression of emotion. It holds potential as a means of providing psychological support. However, evidence of its efficacy in palliative settings is mixed. This may be due to variation in intervention characteristics. AIM: To derive a greater understanding of the characteristics of potentially effective emotional disclosure-based interventions in palliative care by:(1) Developing a taxonomy of emotional disclosure-based interventions tested in people with advanced disease and(2) Mapping and linking objectives, outcomes, underlying mechanisms, and implementation factors. DESIGN: A scoping review drawing on Intervention Component Analysis to combine evidence from studies' methods, results, and discussion sections. DATA SOURCES: Six databases were searched to May 2020 including CINAHL, PsycINFO, and MEDLINE. Studies of emotional disclosure in adults with advanced disease were included. Study quality was appraised using an established tool. RESULTS: Seven thousand seven hundred ninety-two unique records were screened, of which 25 primary studies were included. Intervention characteristics were grouped into classes within three domains: topic of disclosure, format, and dose. Evidence was not available to determine which, if any, of the characteristics is most effective. Thematic synthesis of evidence from methods and discussion sections identified factors to consider in tailoring an emotional disclosure-based intervention to this setting, including: population characteristics (e.g. time since diagnosis), providing a safe environment, and flexibility in format. CONCLUSIONS: This review approach facilitated a clearer understanding of factors that may be key in developing emotional disclosure-based interventions for palliative populations. Intervention Component Analysis has potential for application elsewhere to help develop evidence-based interventions.

Challenges faced during the COVID-19 pandemic by family carers of people living with dementia towards the end of life.

BACKGROUND: People living with dementia account for a large proportion of deaths due to COVID-19. Family carers are faced with making significant and emotive decisions during the pandemic, including decisions about end of life. We aimed to explore the challenges faced by family carers of people living with dementia during the first wave of the COVID-19 pandemic in England, as reported by charity telephone support line staff, who were able to objectively discuss a range of different experiences of many different carers who call the helpline. In particular, we focussed on key concerns and areas of decision making at the end of life. METHODS: We conducted a qualitative study using semi-structured interviews with eight telephone support line staff from two UK based charities who support carers of people living with dementia and those at the end of life. Interviews were conducted in the first wave of the pandemic in England in May-June 2020. RESULTS: An overarching theme of uncertainty and reactivity during a crisis was identified, and within this, five main themes were identified: concerns about care transitions, uncertainty in engaging support and help, pandemic-motivated care planning, maintaining the wellbeing of the person living with dementia, and trust, loss of agency and confusion. CONCLUSIONS: Family carers may be reluctant to seek support because of fear of what may happen to their relative, which may include hospitalisation and becoming ill with COVID-19, care home placement, or not being able to be with a relative at the end of life. In some cases, a lack of trust has developed, and instead carers are seeking support from alternative services they trust such as nationally known charities.This study was used to inform the development of a decision aid to support family carers making decisions about care for their relative with dementia during the pandemic, who the lack the capacity to make their own decisions.

Access to and adequacy of psychological services for adult patients in UK hospices: a national, cross-sectional survey.

BACKGROUND: Providing psychological support to people living with terminal illness is a fundamental part of hospice care. Recent research on delivery of psychological services in hospices in the United Kingdom (UK) on a national level, including inequalities or variation in practice, is limited. A nationwide survey will highlight any differences in provision and in doing so help focus future research and inform best practice both within the UK, and internationally. The specific objectives of this survey are to (1) chart the types of psychological support available to adult patients in hospices in the UK in line with the National Institute for Health and Care Excellence model; (2) explore how services are organised; and (3) gather service perspectives on adequacy of care, and facilitators and barriers to appropriate practice. METHODS: A cross-sectional online survey emailed to adult hospices in the UK in November-December 2019. One staff member involved in the delivery and/or organisation of psychological support was invited to participate per hospice. Of 193 invited hospices, 116 took part. RESULTS: Sixteen percent rated their hospice psychological service as wholly adequate. The majority reported that services can access specialist professionals, but many relied on external referrals. Barriers to best practice included funding and staff capacity; facilitators included clear referral structures, audit and appropriate needs and outcome assessments. CONCLUSIONS: Access to psychological professionals has improved since the last survey 15 years ago, but the majority of responders felt their overall service was not wholly adequate. Basic emotional support is largely felt to be sufficient, but our results indicate a need for improvements in access to more specialist care. Partnerships with external mental health services may be key. Our findings highlight core facilitators and barriers to providing good psychological care at the end of life that should be considered by services both within the UK and on an international level.

Randomised controlled trial of the new short-term online emotion focused training for self-compassion and self-protection in a nonclinical sample.

The Emotion Focused Training for Self-Compassion and Self-Protection (EFT-SCP) is an intervention developed to increase skills of self-compassion and protective anger with the aim to decrease self-criticism. This novel intervention was developed on the basis of the latest findings on self-criticism from Emotion-focused therapy and previous programs cultivating compassion (namely Compassion Mind Training and Mindful Self-Compassion Program). According to existing research, simply cultivating self-compassion is not always sufficient in reducing self-criticism. Therefore, the EFT-SCP was designed to build self-compassion whilst developing protective anger to combat self-criticism. Our goal was to investigate the efficacy of this new, short-term, online EFT-SCP program in a non-clinical population. A randomized control trial was conducted with pre- and post-intervention measurements and two-month follow-up of self-compassion and self-criticism/reassurance. Convenience sampling was used to recruit participants through a snowballing technique on social media. A total of 123 participants were randomly allocated to the EFT-SCP intervention or to a control condition. The intervention group were instructed through emails to complete an EFT-SCP task every day for 14 consecutive days. The control group did not complete any tasks. Out of 123 participants, 31 from intervention group and 20 from control group completed all measurements. There was a significant effect of the EFT-SCP on increasing self-compassion and self-reassurance scores as reported at two-month follow-up. The EFT-SCP was also effective at reducing self-uncompassionate responding and self-criticism (specifically Hated self) with changes evident at two months post-intervention. These findings are encouraging and suggest that interventions designed to enhance self-compassion and decrease self-criticism can be delivered to broader populations without the direct contact with mental health professionals.

The effectiveness of interventions to improve the care and management of people with dementia in general hospitals: A systematic review.

BACKGROUND: People with dementia are at greater risk of being admitted to hospital where care may not be tailored to their needs. Interventions improving care and management are vital. AIM: Assess the effectiveness of interventions designed to improve the care and management of people with dementia in hospital. METHOD: Six medical and trial registry, and grey literature databases were searched (1999-1998/2018). Search terms included "Dementia," "Hospital," and "Intervention" and limited to experimental designs. Interventions designed to improve the care and management of people with dementia in the general hospital setting were examined. Outcomes included behavioural and psychological symptoms of dementia (BPSD), psychosocial, clinical, staff knowledge, and length of hospital stay. The CASP tools, Cochrane risk of bias tool, and GRADE system assessed methodological quality and certainty of evidence. RESULTS: 9003 unique citations were identified; 24 studies were included. Studies were limited in study design and their conduct was at a risk of bias. There is very low-quality evidence that multisensory behaviour therapy reduces BPSD. There is low-quality evidence that a multidisciplinary programme reduces postoperative complications and that robot-assisted therapy, music therapy, multimodal-comprehensive care, person-centred care, and family-centred function-focused care interventions improved staff knowledge, competence, efficacy, and communication. No studies reported reduced length of stay. CONCLUSIONS: Whilst we found that these interventions improved the care and management of people with dementia in hospital, it was low- to very low-quality evidence. New clinical recommendations cannot be made based on current evidence, and robust trial designs are necessary to inform evidence-based care.

Empowering Better End-of-Life Dementia Care (EMBED-Care): A mixed methods protocol to achieve integrated person-centred care across settings.

OBJECTIVES: Globally, the number of people with dementia who have palliative care needs will increase fourfold over the next 40 years. The Empowering Better End-of-Life Dementia Care (EMBED-Care) Programme aims to deliver a step change in care through a large sequential study, spanning multiple work streams. METHODS: We will use mixed methods across settings where people with dementia live and die: their own homes, care homes, and hospitals. Beginning with policy syntheses and reviews of interventions, we will develop a conceptual framework and underpinning theory of change. We will use linked data sets to explore current service use, care transitions, and inequalities and predict future need for end-of-life dementia care. Longitudinal cohort studies of people with dementia (including young onset and prion dementias) and their carers will describe care transitions, quality of life, symptoms, formal and informal care provision, and costs. Data will be synthesised, underpinned by the Knowledge-to-Action Implementation Framework, to design a novel complex intervention to support assessment, decision making, and communication between patients, carers, and inter-professional teams. This will be feasibility and pilot tested in UK settings. Patient and public involvement and engagement, innovative work with artists, policymakers, and third sector organisations are embedded to drive impact. We will build research capacity and develop an international network for excellence in dementia palliative care. CONCLUSIONS: EMBED-Care will help us understand current and future need, develop novel cost-effective care innovations, build research capacity, and promote international collaborations in research and practice to ensure people live and die well with dementia.

Complementary therapy in palliative care: A synthesis of qualitative and quantitative systematic reviews.

BACKGROUND: Interventions delivered in palliative care are complex and their evaluation through qualitative and quantitative research can lead to contrasting results. In a systematic review of trials, the effectiveness results of complementary therapies in palliative care were inconclusive; however, our qualitative synthesis showed participants perceived them to be beneficial. AIM: Use a novel methodology to synthesise evidence from qualitative and quantitative systematic reviews on complementary therapy in palliative care to explore the following: (1) If interventions delivered in trials reflect how participants in qualitative studies report they are delivered in real-life settings and (2) whether quality of life measures used in trials capture perceived benefits that are reported in qualitative studies. METHODS: Two matrix tables were formulated. In one, key components in delivery of the complementary therapy from the qualitative synthesis which are as follows: (1) relationship with therapist, (2) comfortable environment, (3) choices (e.g. area of massage) and (4) frequent sessions, were plotted against intervention description, to explore matches and mismatches. In the other, items included in quality of life scales were compared with perceived benefits of complementary therapy. RESULTS: None of the trials included all four key delivery components. The five quality of life scales used in the trials failed to capture the range of perceived benefits from the complementary therapies and many included inappropriate or redundant items. CONCLUSIONS: By integrating qualitative and quantitative review data, we determined the reasons trials may be inconclusive. This methodological exemplar provides a framework for understanding complexity in outcomes across trials and a direction for future research.

The effectiveness of aromatherapy, massage and reflexology in people with palliative care needs: A systematic review.

BACKGROUND: Aromatherapy, massage and reflexology are widely used in palliative care. Despite this, there are questions about their suitability for inclusion in clinical guidelines. The need to understand their benefits is a public priority, especially in light of funding pressures. AIM: To synthesise current evidence on the effectiveness of aromatherapy, massage and reflexology in people with palliative care needs. DESIGN: A systematic review of randomised controlled trials (PROSPERO CRD42017081409) was undertaken following international standards including Cochrane guidelines. The quality of trials and their pooled evidence were appraised. Primary outcomes on effect were anxiety, pain and quality-of-life. DATA SOURCES: Eight citation databases and three trial registries were searched to June 2018. RESULTS: Twenty-two trials, involving 1956 participants were identified. Compared with a control, four evaluated aromatherapy, eight massage and six reflexology. A further four evaluated massage compared with aromatherapy. Trials were at an unclear risk of bias. Many had small samples. Heterogeneity prevented meta-analysis. In comparison with usual care, another therapy or an active control, evidence on the effectiveness of massage and aromatherapy in reducing anxiety, pain and improving quality-of-life was inconclusive. There was some evidence (low quality) that compared to an active control, reflexology reduced pain. CONCLUSIONS: This review identified a relatively large number of trials, but with poor and heterogeneous evidence. New clinical recommendations cannot be made based on current evidence. To help provide more definitive trial findings, it may be useful first to understand more about the best way to measure the effectiveness of these therapies in palliative care.

Aromatherapy, massage and reflexology: A systematic review and thematic synthesis of the perspectives from people with palliative care needs.

BACKGROUND: Effectiveness evidence of complementary therapies in people with advanced disease is uncertain, and yet people are still keen to engage in complementary therapy. Insights into people's experiences of complementary therapy in palliative care, the perceived benefits, and how they want it delivered, can inform clinical guidelines and suggest ways to test therapies more appropriately in future evaluations. AIMS: Explore in people with advanced disease (1) the experiences and perceptions of benefits and harms of aromatherapy, massage, and reflexology and (2) how they would like these therapies delivered. DESIGN: A systematic review and thematic synthesis of qualitative studies. Database search terms were related to palliative care, aromatherapy, reflexology and massage. Citations and full texts were reviewed independently against predefined inclusion criteria. Studies were appraised for quality. This review is registered at PROSPERO (22/11/2017 CRD42017081409). DATA SOURCES: MEDLINE, EMBASE, PsycINFO, AMED, CINAHL, KoreaMed and ProQuest with a bibliography search to June 2018. RESULTS: Five qualitative studies in advanced cancer were identified. Three analytical themes were identified: (1) Experience during the therapy (enhanced well-being and escapism), (2) beyond the complementary therapy session (lasting benefits and overall evaluation), and (3) delivery of complementary therapy in palliative care (value of the therapist and delivery of the complementary therapy). CONCLUSIONS: People with advanced cancer experience benefits from aromatherapy, reflexology and massage including enhanced well-being, respite, and escapism from their disease. Complementary therapy interventions should be developed in consultation with the target population to ensure they are delivered and evaluated, where feasible, as they wish.