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Contains fulltext : 292516.pdf (Publisher’s version ) (Open Access) OBJECTIVE: To explore the preferences of people with memory complaints (PwMC) and their significant others regarding starting a diagnostic trajectory for dementia. METHODS: A systematic literature search was conducted in PubMed, PsycINFO, CINAHL, Web of Science, and Embase. Selection of abstracts and papers was performed independently by two researchers. Methodological quality was assessed with the Mixed Method Appraisal Tool. Result sections of the selected papers were thematically synthesized. RESULTS: From 2497 citations, seven qualitative studies and two mixed methods studies published between 2010 and 2020 were included. Overall quality of the studies was high to moderate. A thematic synthesis showed that preferences for starting a diagnostic trajectory arose from the feeling of needing to do something about the symptoms, beliefs on the necessity and expected outcomes of starting a diagnostic trajectory. These views were influenced by normalization or validation of symptoms, the support or wishes of the social network, interactions with health care professionals, the health status of the PwMC, and societal factors such as stigma and socioeconomic status. CONCLUSION: A variety of considerations with regard to decision-making on starting a diagnostic trajectory for dementia were identified. This emphasizes the need to explore individual preferences to facilitate a timely dementia diagnosis.

Informal caregivers of dependants with dementia commence their bereavement experience long before the physical death of their dependant, a process referred to as "anticipatory grief". This represents an ambiguous state that has been acknowledged as a measurable variable among informal caregivers. The use of assessment tools for the identification of anticipatory grief is important for timely intervention to promote well-being and positive bereavement experiences. The aim of this systematic review is to identify and examine existing tools for assessing anticipatory grief among caregivers of dependants with dementia.MEDLINE, EMBASE, PsychINFO, CINAHL and Web of Science were searched to July 2021. Studies focusing on the development/evaluation of instruments for measuring anticipatory grief in dementia caregivers were eligible. The quality of each measurement was graded as positive, fair, poor or no information based on defined criteria.100 studies were identified. 33 papers were selected for full-text assessment and 12 papers met the eligibility criteria. Seven assessment tools were identified for measurement of pre-death grief caregivers - the Anticipatory Grief Scale (AGS), Marwit-Meuser Caregiver Grief Inventory (MM-CGI), MM-CGI-short-form (MM-CGI-SF), MM-CGI-brief (MM-CGI-BF), Prolonged Grief Scale (PG-12), Caregiver Grief Scale (CGS) and Caregiver Grief Questionnaire (CGQ). Based on content/construct validity, internal consistency and test-retest reliability the MM-CGI/MM-CGI-SF scored highest for quality followed by the CGS.Anticipatory grief in dementia has multiple facets that can be measured using self-scoring questionnaires. Our findings provide support for different measures of anticipatory grief. Further research is needed for the evaluation of the responsiveness and interpretability of these instruments.

Objectives: Whether and how patients should be told their dementia diagnosis, has been an area of much debate. While there is now recognition that early diagnosis is important for dementia care little research has looked at how dementia-related diagnostic information is actually verbally communicated. The limited previous research suggests that the absence of explicit terminology (e.g., use of the term Alzheimer's) is problematic. This paper interrogates this assumption through a conversation analysis of British naturalistic memory clinic interaction.\ud \ud Method: This paper is based on video-recordings of communication within a UK memory clinic. Appointments with 29 patients and accompanying persons were recorded, and the corpus was repeatedly listened to, in conjunction with the transcripts in order to identify the segments of talk where there was an action hearable as diagnostic delivery, that is where the clinician is evaluating the patient's condition.\ud \ud Results: Using a conversation analytic approach this analysis suggests that diagnostic communication, which is sensitive and responsive to the patient and their carers, is not predicated on the presence or absence of particular lexical choices. There is inherent complexity regarding dementia diagnosis, especially in the ‘early stages’, which is produced through and reflected in diagnostic talk in clinical encounters.\ud \ud Conclusion: In the context of continuity of dementia care, diagnostic information is communicated in a way that conforms to intersubjective norms of minimizing catastrophic reactions in medical communication, and is sensitive to problems associated with ‘insight’ in terms of delivery and receipt or non-receipt of diagnosis.

Cognitive deficits such as memory problems have a major impact on independence in daily life and participation in society in several populations, such as people with dementia, brain injury (i.e. stroke) or a severe mental illness such as schizophrenia. Similarities in the impact on participation and well-being have resulted in the development of comparable psychosocial interventions across populations, aiming to support people to adapt to cognitive deficits or by adapting the environment. These interventions are developed separately, without using the expertise in other fields. We argue that each of the fields and the field of psychosocial care in general would benefit from closer collaboration on development and evaluation of innovative psychosocial interventions. Collaboration has been complicated by the use of different care models and theoretical frameworks, each with their own terminology. The concept of social health - the ability to participate in work or other meaningful activities and to feel healthy despite a condition - translates to the leading care models within the fields of dementia, brain injury and severe mental illness. The concept of social health provides a common language and framework. In this paper, we elaborate on strategies for collaboration using examples of interventions to improve social health.

Objectives: With rates of diagnosed dementia increasing, and the state becoming increasingly reliant on informal carers, caregiver burden can lead to increased stress, depression and health difficulties for caregivers and care-recipients. This systematic review aimed to examine the published evidence, for interventions designed to reduce levels of carer burden, in those caring for a person with dementia. Methods: Three databases were searched (Medline, PsycINFO and CINAHL) for studies reporting on randomised controlled trials of non-pharmacological interventions for dementia-related caregiver burden (limiting to publications since 1999 to build upon a previous review by Acton & Kang [2001]). Data quality checks were completed for included papers and meta-analysis was performed to estimate the efficacy of individual interventions and different categories of non-pharmacological intervention. Results: Thirty studies were included in the analysis. Seven studies found a significant reduction in carer burden and a pooled effect found that intervening was more effective than treatment as usual (SMD = -0.18, CI = -0.30, -0.05). This result was small, but significant (p = 0.005). Multi-component interventions are more effective than other categories. High heterogeneity means that results should be interpreted with caution. Conclusions: Interventions that significantly reduced levels of burden should be replicated on a larger scale. The relative effectiveness of interventions targeting cognitive appraisals and coping styles suggests that future interventions might be informed by models theorising the role of these processes in carer burden.

Objectives: People with dementia are more likely to fall and less likely to recover well after a fall than cognitively intact older people. Little is known about how best to deliver services to this patient group. This paper explores the importance of compensating for cognitive impairment when working with people with dementia. Methods: Qualitative methods - interviews, focus groups and observation - were used to explore the views and experiences of people with dementia, family carers and professionals providing services to people with dementia following an injurious fall. A thematic, iterative analysis was undertaken in which emerging themes were identified from each individual dataset, prior to an integrative analysis. Results: A key theme across all datasets was the need to deliver services in ways that compensate for cognitive impairment, such as negotiating meaningful activities that can be embedded into the routines of people with dementia. Professionals varied in their ability to adapt their practice to meet the needs of people with dementia. Negative attitudes towards dementia, a lack of knowledge and understanding of dementia limited the ability of some professionals to work in person-centred ways. Conclusion: Improving outcomes for people with dementia following a fall requires the principles of person-centred care to be enacted by professionals with a generic role, as well as specialist staff. This requires additional training and support by specialist staff to address the wide variability in current practice.

We undertook a cluster-randomised controlled trial exploring the effect of a therapeutic companion robot (PARO) compared to a look-alike plush toy and usual care on dementia symptoms of long-term care residents. Complementing the reported quantitative outcomes , this paper provides critical reflection and commentary on individual participant responses to PARO, observed through video recordings , with a view to informing clinical practice and research. A descriptive, qualitative design with five participants selected from the PARO intervention arm of the trial. The trial is registered with the Australian New Zealand Clinical Trials Registry (ACTRN12614000508673). The five participants and their responses to PARO are presented in terms of three issues: i.) Different pre-intervention clinical presentations and different responses; ii.) Same individual, different response - the need for continual assessment and review; and iii.) The ethics of giving and retrieving PARO. Implications for clinical practice and future research are discussed in relation to each issue. The findings suggest that one approach does not fit all, and that there is considerable variation in responses to PARO. A number of recommendations are discussed to aid the delivery of psychosocial interventions with PARO in practice, as well as to guide future research.

BACKGROUND: Literature agrees that post-diagnostic services for people living with young onset dementia (YOD) need to be age-appropriate, but there is insufficient evidence of 'what works' to inform service design and delivery.\ud \ud OBJECTIVE: To provide an evidence base of age-appropriate services and to review the perceived effectiveness of current interventions.\ud \ud METHODS: We undertook a systematic review including all types of research relating to interventions for YOD. We searched PubMed, CINHAL Plus, SCOPUS, EBSCO Host EJS, Social Care Online and Google Scholar, hand-searched journals and carried out lateral searches (July-October 2016). Included papers were synthesised qualitatively. Primary studies were critically appraised. RESULTS: Twenty articles (peer-reviewed [n = 10], descriptive accounts [n = 10]) discussing 195 participants (persons diagnosed with YOD [n = 94], caregivers [n = 91] and other [n = 10]) were identified for inclusion. Services enabled people with YOD to remain living at home for longer. However, service continuity was compromised by short-term project-based commissioning and ad-hoc service delivery. \ud \ud CONCLUSION: The evidence on the experience of living with YOD is not matched by research and the innovation needed to mitigate the impact of YOD. The inclusion of people with YOD and their caregivers in service design is critical when planning support in order to delay institutional care.

© 2016 Informa UK Limited, trading as Taylor & Francis Group. Objectives: This paper reports two related analyses of verbal material from seven Living Well with Dementia groups: the first examines changes in the verbal behaviours of participants across the course of the sessions in all seven groups; while the second contrasts therapist behaviour in two groups. Methods: In the first analysis, recordings of three sessions from each group were transcribed and participant descriptions of dementia were analysed using the Markers of Assimilation of Problematic Experiences of Dementia (MAPED) rating procedure. In the second analysis, therapist behaviour in weeks 2 and 8 from two groups (F and G) was analysed using the Hill Counsellor Verbal response rating scale. Inter-rater reliabilities for the two sets of ratings were ‘good’ and ‘very good’, respectively. Results: For the MAPED ratings, a five by four contingency table was analysed using chi-squared, which indicated a highly significant change in assimilation. There were significant higher levels of level 1 and 2 markers in the first two sessions and level 4 for sessions 5 and 6. Facilitators used significantly more direct guidance and information giving behaviour in the second session at Location F compared to Location G. Conclusions: The results suggest that important changes occurred in the way that dementia was described across the seven LivDem groups: this includes both reductions in the avoidance of direct references to dementia after the first two sessions, as well as an increase in ‘insight’ statements. Directive facilitator behaviour may be associated with poorer outcomes.

Objectives: Subjective memory complaints (SMC) are common in older people and previous research has shown an association with mood problems, such as depression and anxiety. SMC form part of the criteria for many definitions of mild cognitive impairment (MCI), but there is controversy over whether they should be included as they may be related more strongly to mood than to objective cognitive impairment. This study aims to clarify the relationship between mood and SMC in people with MCI. Method: This paper reports an analysis of data from the Medical Research Council Cognitive Function and Ageing study. Structured interviews were conducted with community-dwelling older people to assess a range of aspects of cognitive functioning and mood. Data from two time points approximately 24 months apart were used in this analysis. At baseline, participants without dementia or severe cognitive impairment were categorised into three groups according to cognitive status. Mood was investigated by assessing symptoms of anxiety and depression which were defined using a diagnostic algorithm. Associations were tested using logistic regression and chi square analyses. Results: A clear association was shown between SMC and mood, both cross-sectionally and over time. The relationship between our two competing definitions of MCI suggested that mood problems were more strongly related to the presence of SMC than objective cognitive impairment. Conclusion: SMC may be a function of anxiety and depression rather than being related to objective cognitive function. This questions whether SMC should be included in definitions of MCI.

Objectives: This paper reports on the acceptability and effectiveness of the FITS (Focussed Intervention Training and Support) into Practice Programme. This intervention was scaled up from an earlier cluster randomised-controlled trial that had proven successful in significantly decreasing antipsychotic prescribing in care homes. Method: An in depth 10-day education course in person-centred care was delivered over a three-month period, followed by six supervision sessions. Participants were care-home staff designated as Dementia Care Coaches (DCCs) responsible for implementing interventions in 1 or 2 care homes. The course and supervision was provided by educators called Dementia Practice Development Coaches (DPDCs). Effectiveness data included monitoring antipsychotic prescriptions, goal attainment, knowledge, attitudes and implementation questionnaires. Qualitative data included case studies and reflective journals to elucidate issues of implementation. Results: Of the 100 DCCs recruited, 66 DCCs completed the programme. Pre-post questionnaires demonstrated increased knowledge and confidence and improved attitudes to dementia. Twenty per cent of residents were prescribed antipsychotics at baseline which reduced to 14% (31% reduction) with additional dose reductions being reported alongside improved personalised goal attainment. Crucial for FITS into Practice to succeed was the allocation and protection of time for the DCC to attend training and supervision and to carry out implementation tasks in addition to their existing job role. Evaluation data showed that this was a substantial barrier to implementation in a small number of homes. Discussion and conclusions: The FITS into practice programme was well evaluated and resulted in reduction in inappropriate anti-psychotic prescribing. Revisions to the intervention are suggested to maximise successful implementation.

© 2014 Taylor and Francis. Objectives: The aim of this paper is to report a pilot study in which participants who had recently received a diagnosis of dementia were randomised to either a 10-week group intervention or a waiting-list control.Method: Memory clinic staff with limited previous experience of group therapy were trained to lead a 10-week group therapy intervention called Living Well with Dementia. Fifty-eight participants, all of whom had received a diagnosis of Alzheimer's disease, vascular or Lewy body dementia within the previous 18 months, were randomised to receive either the intervention or treatment as usual (waiting-list control). Data collection occurred at baseline, within two weeks after the intervention finished and at 10-week follow-up.Results: The study met its recruitment targets, with a relatively low attrition rate for the intervention arm. The acceptability of the intervention and research methods was examined qualitatively and will be reported on elsewhere. For the primary outcome, measure of quality of life in Alzheimer's disease (QoL-AD), and secondary outcome, self-esteem, there was some evidence of improvement in the intervention group compared to the control group. There was, also, evidence of a reduction in cognitive functioning in the treatment group compared to the control. Such reported differences should be treated with caution because they are obtained from a pilot and not a definitive study.Conclusion: This pilot study succeeded in collecting data to inform a future definitive cost effectiveness clinical trial of Living Well with Dementia group therapy.

Rural and urban differences in the effects of care-giving are not well documented. This paper reports data on 122 carers for people with stroke or dementia living in rural and urban settings in Wales.Carers completed a postal questionnaire, including the SF-12v2 Health Survey. Definitions of rural and urban were based on the Urban/Rural Indicator from the Office of National Statistics (ONS) All Fields Postcode Directory 2004.Carers' mean Mental Component Summary (MCS) score (adjusted for age and sex) was one standard deviation below the population mean (-12.03). Male carers living in urban areas reported better mental health than male carers in rural areas (p0.05) and female carers in both settings (p0.05). A full model and a parsimonious model were developed, using MCS scores as outcome variables. In the full model sitting service provision in rural and urban locations was linked to better carer mental health, while support from friends and family was linked to better mental health for urban carers only.Our findings indicate the existence of both gender and location differences in carer experiences.

Objectives: Increasingly, research has explored how psychological resources enable adaptation to illness. However, it is unclear whether psychological resources protect against the potential negative effects on living well with a progressive and life-limiting condition such as dementia. This paper examines the association between psychological resources and the ability to 'live well' with dementia.Method: Data from 1547 people with mild-to-moderate dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort were used. Multivariate linear regression was employed to examine the association between self-reported measures of psychological resources (self-efficacy, optimism and self-esteem) and indices of capability to 'live well' (quality of life, well-being and life satisfaction).Results: All three measures of psychological resources had positive and independent associations with indices of living well and the effect sizes were similar. Effect sizes reduced when accounting for shared variance between psychological resources, showing some overlap in these constructs.Conclusion: Self-efficacy, optimism and self-esteem were each associated with capability to 'live well'. Overlap between these three resources is evident and when combined they may provide greater resilience when dealing with the challenges of living with dementia. Interventions for people with dementia could seek to improve levels of these potentially-modifiable psychological resources.