This is a repository copy of The impacts of family involvement on general hospital care experiences for people living with dementia: An ethnographic study.

BackgroundPsychosocial person-centred interventions are considered best practice for addressing complex behaviours and care needs such as agitation and anxiety, and for improving the quality of life of people with dementia in care homes. Dementia Care Mapping (DCM™) is an established practice development tool and process aimed to help care home staff deliver more person-centred care. To date, few studies have evaluated the efficacy of DCM™ and have found mixed results. These results are suggested to be the outcome of intervention implementation, which may be impacted by a range of factors. This study reports the barriers and facilitators to DCM™ implementation in care homes found during the process evaluation conducted as part of a randomized controlled trial.MethodsEighteen of the 31 DCM™ intervention care homes were recruited to participate in the embedded process evaluation. Semi-structured interviews were conducted with 83 participants, comprising care home managers, trained DCM™ users (mappers), expert external mappers, staff members, relatives, and residents.ResultsBarriers and facilitators to DCM™ implementation were found at the mapper level (e.g. motivation and confidence), the DCM™ intervention level (e.g. understanding of DCM™) and the care home level (e.g. staffing issues, manager support). Further barriers caused by the burden of trial participation were also identified (e.g. additional paperwork).ConclusionsImplementing DCM™ is complex and a greater consideration of potential barriers and facilitators in planning future studies and in practice could help improve implementation.Trial registrationCurrent Controlled Trials ISRCTN82288852, registered 16/01/2014.

Background Providing cancer care and treatment for ageing populations with complicating comorbidities like dementia is a growing global challenge. This study aimed to examine the hospital-based cancer care and treatment challenges and support needs of people with dementia, and identify potential ways to address these. Methods A two-site ethnographic study in England involving semi-structured interviews, observations and accompanying conversations, and medical record review. Participants (N = 58) were people with dementia and comorbid cancer (n = 17), informal caregivers (n = 22) and hospital staff (n = 19). Ethnographically informed thematic analysis was conducted. Results There was an accumulated complexity of living with both illnesses simultaneously. People with dementia and families could feel confused and uninformed due to difficulties understanding, retaining and using cancer information, which impacted their informed treatment decision-making. Dementia increased the complexity and burden of travelling to and navigating unfamiliar hospital environments, frequent lengthy periods of waiting in hospital, and self-managing symptoms and side-effects at home. Oncology staff were often working without the full picture, due to variable documenting of dementia in medical records, dementia training was limited, and time and resource pressures impeded the highly individualised, flexible cancer care required by people with dementia. Supportive family carers were crucial in enabling people with dementia to access, navigate and undergo cancer treatment and care. Conclusions Dementia complicates cancer care in a range of ways accumulating across the cancer pathway. Our findings suggest there are several strategies and interventions, which we list here, with potential to improve cancer care and treatment for people with dementia and their families.

BackgroundSelf-poisoning and self-injury have widely differing incidences in hospitals and in the community, which has led to confusion about the concept of self-harm. Categorising self-harm simply by method may be clinically misleading because many hospital-attending patients switch from one method of harm to another on subsequent episodes. The study set out to determine the frequency, pattern, determinants and characteristics of method-switching in self-harm episodes presenting to the general hospital. MethodsThe pattern of repeated self-harm was established from over 33,000 consecutive self-harm episodes in a multicentre English cohort, categorising self-harm methods as poisoning, cutting, other injury, and combined methods. ResultsOver an average of 30 months of follow-up, 23% of people repeated self-harm and one-third of them switched method, often rapidly, and especially where the person was male, younger, or had selfharmed previously. Self-poisoning was far less likely than other methods to lead on to switching. LimitationsSelf-harm episodes that do not lead to hospital attendance are not included in these findings but people who self-harmed and went to hospital but were not admitted from the emergency department to the general hospital, or did not receive designated psychosocial assessment are included. People in the study were a mix of prevalent as well as incident cases. ConclusionsMethod of self-harm is fluctuating and unpredictable. Clinicians should avoid false assumptions about people's risks or needs based simply on method of harm.

Background: Medical students consistently report low rates of interest in psychiatry as a career over time with negative perceptions of the specialty. Only 3-6% of students enter the specialty. Aim: To explore medical students' current career choices and attitudes to psychiatry and factors affecting these. Methods: Medical students at four UK medical schools completed a questionnaire related to career specialty choices and psychiatry and their psychiatry placement experiences. Results: A total of 905 questionnaires were returned. Psychiatry was first career specialty choice in 4% but in the top three choices in 14%. The students in this group who had undertaken clinical placements were more positively inclined towards psychiatry, given more opportunities to practice and receive feedback on psychiatric skills, and more inclined to practice psychiatry later. Conclusion: One in seven students is interested in psychiatry. Psychiatrists need to find ways to identify these students and target them with individually tailored interventions to help recruitment into the specialty.

Purpose There are many validated quality-of-life (QoL) measures designed for people living with dementia. However, the majority of these are completed via proxy-report, despite indications from community-based studies that consistency between proxy-reporting and self-reporting is limited. The aim of this study was to understand the relationship between self-and proxy-reporting of one generic and three disease-specific quality-of-life measures in people living with dementia in care home settings. Methods As part of a randomised controlled trial, four quality-of-life measures (DEMQOL, EQ-5D-5L, QOL-AD and QUALID) were completed by people living with dementia, their friends or relatives or care staff proxies. Data were collected from 726 people living with dementia living in 50 care homes within England. Analyses were conducted to establish the internal consistency of each measure, and inter-rater reliability and correlation between the measures. Results Residents rated their quality of life higher than both relatives and staff on the EQ-5D-5L. The magnitude of correlations varied greatly, with the strongest correlations between EQ-5D-5L relative proxy and staff proxy. Internal consistency varied greatly between measures, although they seemed to be stable across types of participants. There was poor-to-fair inter-rater reliability on all measures between the different raters. Discussion There are large differences in how QoL is rated by people living with dementia, their relatives and care staff. These inconsistencies need to be considered when selecting measures and reporters within dementia research.

Dementia Care Mapping (DCM) is an observational tool set within a practice development process. Following training in the method, DCM is implemented via a cyclic process of briefing staff, conducting mapping observations, data analysis and report preparation, feedback to staff and action planning. Recent controlled studies of DCM’s efficacy have found heterogeneous results, and variability in DCM implementation has been indicated as a potential contributing factor. This review aimed to examine the primary research evidence on the processes and the barriers and facilitators to implementing DCM as a practice development method within formal dementia care settings. PUBMED, PsycINFO, CINAHL, The Cochrane Library-Cochrane reviews, HMIC (Ovid), Web of Science and Social Care Online were searched using the term “Dementia Care Mapping”. Inclusion criterion was primary research studies in any formal dementia care settings where DCM was used as a practice development tool and which included discussion/critique of the implementation processes. Assessment of study quality was conducted using the Mixed Methods Appraisal Tool. Twelve papers were included in the review, representing nine research studies. The papers included discussion of various components of the DCM process, including mapper selection and preparation; mapping observations; data analysis, report writing and feedback; and action planning. However, robust evidence on requirements for successful implementation of these components was limited. Barriers and facilitators to mapping were also discussed. The review found some consensus that DCM is more likely to be successfully implemented if the right people are selected to be trained as mappers, with appropriate mapper preparation and ongoing support and with effective leadership for DCM within the implementing organization/unit and in organizations that already have a person-centered culture or ethos. Future development of the DCM tool should consider ways to save on time taken to conduct DCM cycles. More research to understand the ingredients for effective DCM implementation is needed.

Objective: Increasing numbers of people are expected to live with comorbid cancer and dementia. Cancer treatment decision-making for these individuals is complex, particularly for those lacking capacity, requiring support across the cancer care pathway. There is little research to inform practice in this area. This ethnographic study reports on the cancer decision-making experiences of people with cancer and dementia, their families, and healthcare staff. Methods: Participant observations, informal conversations, semi-structured interviews, and medical note review, in two NHS trusts. Seventeen people with dementia and cancer, 22 relatives and 19 staff members participated. Results: Decision-making raised complex ethical dilemmas and challenges and raised concerns for families and staff around whether correct decisions had been made. Whose decision it was and to what extent a person with dementia and cancer was able to make decisions was complex, requiring careful and ongoing consultation and close involvement of relatives. The potential impact dementia might have on treatment understanding and toleration required additional consideration by clinicians when evaluating treatment options. Conclusions: Cancer treatment decision-making for people with dementia is challenging, should be an ongoing process and has emotional impacts for the individual, relatives, and staff. Longer, flexible, and additional appointments may be required to support decision-making by people with cancer and dementia. Evidence-based decision-making guidance on how dementia impacts cancer prognosis, treatment adherence and efficacy is required.