Longitudinal studies can provide insights into how family members negotiate the caring role and carer identity over time. The analyses of the longitudinal, qualitative interviews on ‘living well’ with dementia from the IDEAL cohort study aimed to identify the shifting, embedded narratives of family members of people with dementia as they negotiated the caring role and carer identity over time. Twenty semi-structured, qualitative interviews were conducted with family members of people with dementia and 14 were repeated one year later; these interviews were analysed using cross-sectional and longitudinal thematic and structural narrative analyses. Longitudinal, interrelated themes, including the care needs and decline of the person with dementia, relationship change and variable service support, framed the narrative types of family members. Six shifting narratives, apparent as dominant and secondary narrative types, characterized negotiating the caring role over time: absent/normalizing, active role adoption / carer identity, resistance, acceptance and resignation, hypervigilance/submergence and role entrapment, and foreshadowed future. The presence or absence of a carer identity was also evident from interviewees’ accounts, although, even where family members were overburdened by the caring role, they did not necessarily express a carer identity. Rather than considering transition into a carer identity, hearing different narratives within the caring role is important to understand how family members experience caring, whether they see themselves as ‘carers’, and when and how they need support. Timely and continued post-diagnostic support, where different caring narratives are recognized, is needed, as well as international initiatives for carer identification.

Objectives: People with dementia live with unmet needs due to dementia and other conditions. The EMBED-Care Framework is a co-designed app-delivered intervention involving holistic assessment, evidence-based decision- support tools and resources to support its use. Its intention is to empower people with dementia, family and practitioners to assess, monitor and manage needs. We aimed to explore the feasibility and acceptability of the EMBED-Care Framework and develop its underpinning programme theory.

Methods: A six-month single arm mixed-Methods feasibility and process evaluation, underpinned by an initial programme theory which was iteratively developed from previous studies. The settings were two community teams and two long term care facilities (LTCFs). People with dementia and family were recruited to receive the intervention for 12 weeks. Practitioners were recruited to deliver the intervention for six months. Quantitative data included candidate process and outcome measures. Qualitative data comprised interviews, focus groups and observations with people with dementia, family and practitioners. Qualitative and quantitative data were analysed separately and triangulated at the interpretation phase.

Results: Twenty-six people with dementia, 25 family members and 40 practitioners were recruited. Practitioners in both settings recognized the potential benefit for improving care and outcomes for people with dementia, and to themselves in supporting care provision. Family in both settings perceived a role in informing assessment and decisions about care. Family was integral to the intervention in community teams but had limited involvement in LTCFs. In both settings, embedding the intervention into routine care processes was essential to support its use. In community teams, this required aligning app functionality with care processes, establishing processes to monitor alerts, and clarifying team responsibilities. In LTCFs, duplication of care processes and limited time to integrate the intervention into routine care processes, affected its acceptability.

Conclusions: A theoretically informed co-designed digital intervention has potential to improve care processes and outcomes for people with dementia and family, and is acceptable to practitioners in community teams. Further work is required to strengthen the intervention in LTCFs to support integration into care processes and support family involvement. The programme theory detailing key mechanisms and likely outcomes of the EMBED-Care Framework is presented.

There is a growing evidence base that identifying positive experiences in providing care can have a beneficial influence on carer wellbeing. However, there is a need to better understand what carers identify as the positive aspects of care-giving. The aim of this study is to explore the satisfying aspects of providing care to people with dementia. This study utilised Time 1 data from 1,277 carers of people in the mild-to-moderate stages of dementia taking part in the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort study. Responses from 900 carers who answered the open-ended question ‘What is your greatest satisfaction in caring for your relative/friend?’ were analysed using thematic analysis. From the responses, 839 carers detailed satisfactions. Eight themes were identified, pertaining to three groups of beneficiaries: carers, people with dementia and the dyad. Perceived benefits for carers included identifying aspects of personal growth, seeing glimpses of the person, feeling they were making a difference and doing their duty. For the person with dementia, these included retaining independence, receiving good quality care and being happy. Dyadic benefits concerned the continuation of the relationship between carer and person with dementia. The findings highlight the need to take a dyadic approach when conceptualising positive experiences in providing care. Further research is needed to understand the role these positive experiences play and to develop interventions. Professionals working with carers should identify and validate these experiences.

Current policy emphasises the importance of ‘living well’ with dementia, but there has been no comprehensive synthesis of the factors related to quality of life (QoL), subjective well-being or life satisfaction in people with dementia. We examined the available evidence in a systematic review and meta-analysis. We searched electronic databases until 7 January 2016 for observational studies investigating factors associated with QoL, well-being and life satisfaction in people with dementia. Articles had to provide quantitative data and include ⩾75% people with dementia of any type or severity. We included 198 QoL studies taken from 272 articles in the meta-analysis. The analysis focused on 43 factors with sufficient data, relating to 37639 people with dementia. Generally, these factors were significantly associated with QoL, but effect sizes were often small (0.1–0.29) or negligible (<0.09). Factors reflecting relationships, social engagement and functional ability were associated with better QoL. Factors indicative of poorer physical and mental health (including depression and other neuropsychiatric symptoms) and poorer carer well-being were associated with poorer QoL. Longitudinal evidence about predictors of QoL was limited. There was a considerable between-study heterogeneity. The pattern of numerous predominantly small associations with QoL suggests a need to reconsider approaches to understanding and assessing living well with dementia.

This study determined the effects and costs of a multifactorial, interdisciplinary team approach to falls prevention. Randomized controlled trial of 109 older adults who are at risk for falls. This was a six-month multifactorial and evidence-based prevention strategy involving an interdisciplinary team. The primary outcome was number of falls during the six-month follow-up. At six months, no difference in the mean number of falls between groups. Subgroup analyses showed that the intervention effectively reduced falls in men (75–84 years old) with a fear of falling or negative fall history. Number of slips and trips was greatly reduced; and emotional health had a greater improvement in role functioning related to emotional health in the intervention group. Quality of life was improved, slips and trips were reduced, as were falls among males (75–84 years old) with a fear of falling or negative fall history.

This study examined the six-month prevalence, risk factors, and costs of falls in older people using home support services who are at risk of falling. Of the 109 participants, 70.6 per cent reported ≥ one fall in the previous six months, and 27.5 per cent experienced multiple falls. Although there was no statistically significant difference in any fall-related risk factor between fallers (1+ falls) and non-fallers (0 falls), fallers had clinically important trends towards lower levels of physical, social, and psychological functioning. There was no statistically significant difference between fallers and non-fallers in the total per-person costs of use of health services in the previous six months; however, there were significant differences between groups in specific types of health services. The multivariate analysis revealed the presence of five risk factors for falls: neurological disorder (e.g., cognitive impairment, Parkinson’s disease), age ≥ 85 years, environmental hazards, previous slip or trip, and visual impairment.

The financial and social climate in which the residential-care sector operates in the United Kingdom has changed substantially over recent years. This paper examines the underlying motivations for providing residential-care services for older people. We focus on the motivations of a sample of managers and owners of care homes drawn from eight English local authorities, and explore the intrinsic aspects of their motivations, particularly professional achievement, recognition and job satisfaction. The majority of the respondents' primary motivations were to meet the needs of older people and to accomplish professional achievements. Their caring motivations had four principal components, which were labelled professional, financial, client-specific and client-generic, and as for their professional motivations, the interviewees reported high levels of job satisfaction. The respondents were satisfied with their career choice and felt that, through their work, they were contributing to society. The study identified several personal and external factors that influenced the providers' intrinsic motivations and professional aspirations. The presented evidence suggests that if future policies are to improve the quality of care-home services, it is essential that they also incorporate the professional needs of care-home providers.