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Objectives: There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method: One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results: The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion: These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care. [ABSTRACT FROM AUTHOR]

Objectives: Spousal dementia carers have unique support needs; they are likely to disengage from their existing social networks as they need to devote more time to caring as the disease progresses. Previously we showed that support resources can facilitate resilience in carers, but the relationship is complex and varies by relationship type. The current paper aims to explore social support as a key component of resilience to identify the availability, function and perceived functional aspects of support provided to older spousal dementia carers. Method: We conducted 23 in-depth qualitative interviews with spousal carers from two carer support groups and a care home in North West England. Results: Family and friends served a wide range of functions but were equally available to resilient and non-resilient participants. Family support was perceived as unhelpful if it created feelings of overdependence. Participants were less likely to resist involvement of grandchildren due to their relatively narrow and low-level support functions. Friend support was perceived as most helpful when it derived from those in similar circumstances. Neighbours played a functionally unique role of crisis management. These perceptions may moderate the effect of support on resilience. Conclusion: Family and friend support is not always sufficient to facilitate resilience. Support functions facilitate resilience only if they are perceived to match need. Implications of these findings are discussed. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM PUBLISHER]

Often perceived as a last resort, a care home move for a person living with dementia is often undertaken when all other options have been exhausted. Deciding the right or optimal time is to move remains an important question for many families. To investigate factors that are weighed up in deciding to make a care home move. Qualitative in-depth interviews with 21 family carers and 5 care home residents living with dementia in England. Thematic analysis was applied to all transcripts to extract key themes and sub-themes; a summation is provided here. Participants emotionally recollected an accumulation of stressors, exhausting other options of care, a risk/benefit analysis, wishes of person living with dementia, and a readiness to move as indicators of when a 'tipping point' was reached. They also felt strongly that early planning, prior experience of care homes, understanding funding arrangements and having support with decision-making would help. Deciding to move to a care home is complex, contextual and deeply personal. Early planning in the form of joining waiting lists, using day centres and respite services may help in creating relationships with intended care homes for the future. There is growing need for support with financial advice and funding arrangements, for both self- and publicly funded individuals. [ABSTRACT FROM AUTHOR]

Physical activity may have a number of physical and mental health benefits for people with dementia and their carers. However, there is limited evidence about factors that influence physical activity participation in these groups. This study therefore looks at the barriers, facilitators and motivators of physical activity in people with dementia, from both the perspective of the person with dementia and their carer. Thirty participants (15 sets of community-dwelling people with dementia and their family carers) were recruited from the South East of England. The participants took part in semi-structured dyadic interviews about their views of physical activity. Interviews were analysed using inductive thematic analysis at an individual level and comparisons were made between the groups. Common motivator themes across persons with dementia and family carers were emotional and physical wellbeing, and social connectedness. Physical health was seen as a common barrier in both groups. Physical activity in the person with dementia was encouraged and supported by the family carer. For the carer, their caring role, and limited time acted as barriers to their participation. Themes such as social connectedness, positive emotion and health were seen as key motivators to physical activity, which indicate that people with dementia and carers use physical activity as a means to maintain and improve their quality of life. Supporting family members to better facilitate such activities could encourage physical activity in people with dementia. [ABSTRACT FROM AUTHOR]

Objectives: Family carers towards the end of life face a range of difficult challenges and have high levels of support needs. The aim of this study was to explore the challenges carers of people with dementia face towards the end of life and the support needs which could be addressed by online support. Methods: Qualitative study using semi-structured interviews with 23 current and former family carers of people with dementia in England in 2016–2017. Interviews were analysed using thematic analysis methods. Results: Most carers interviewed had positive views of receiving support online via a website. Participants described a series of challenges they felt online support could address and help support them with when caring for someone with dementia towards the end of life: 1) feeling prepared and equipped; 2) feeling connected and supported; 3) balancing their own needs with those of the individual; and 4) maintaining control and being the co-ordinator of care. However many valued a mix of technology and human interaction in receiving support. Conclusions: This study has identified the key challenges for carers at the end of life that could be met by online support. Online support offers a source of support to supplement face-to-face contact, as many carers still wish to talk to someone in person. This could help alleviate pressures which health and social care systems currently face. [ABSTRACT FROM AUTHOR]

Objective: To understand the experience of people who seek help for subjective cognitive concern and memory loss, including people not referred for further assessment. To understand the patients' perspective of the medical process of receiving a cognitive assessment. This work is situated within the context of policy priorities for dementia diagnosis. Methods: Participants with and without dementia were recruited through NHS trusts and community organisations in four regional areas in England. Data were collected using longitudinal qualitative interviews. Transcript data were thematically analysed. Results: Sample of 41 people (mean 75 years, 25 dementia diagnoses). Interpretative thematic analyses focused on the presence or absence of trust in relational experiences. There were three transition points where trust could be specifically developed or undermined: (1) deciding to seek help; (2) healthcare practitioners' response to help-seeking; (3) process and outcome of assessment. Triggers for help-seeking for subjective cognitive concern were being prompted by family and knowing a relative with dementia. When participants perceived healthcare practitioners' behaviour as dismissive, they had less trust in the outcome of the healthcare encounter. Misunderstandings and absence of trust in assessment processes led to participants stating they did not fully agree with the outcomes of the assessment. Conclusions: Healthcare practitioners have an important role in supporting people with subjective cognitive concern ensuring patients have trust in assessment outcomes. Where the validity of the assessment process is seen as ambiguous, people can be left dealing with uncertainty, rather than being clear about ways they can manage their condition, situation or status. [ABSTRACT FROM AUTHOR]

Background and objectives: People with dementia occupy around one quarter of general hospital beds, with concerns consistently raised about care quality. Improving workforce knowledge, skills and attitudes is a mechanism for addressing this. However little is known about effective ways of training healthcare staff about dementia. This study aimed to understand models of dementia training most likely to lead to improved practice and better care experiences for people with dementia, and to understand barriers and facilitators to implementation. Method: A collective case study was conducted in three National Health Service Acute Hospital Trusts in England. Multiple data sources were used including interviews with training leads/facilitators, ward managers and staff who had attended training; satisfaction surveys with patients with dementia and/or carers; and observations of care using Dementia Care Mapping. Results: Interactive face-to-face training designed for general hospital staff was valued. Simulation and experiential learning methods were felt to be beneficial by some staff and stressful and distressing by others. Skilled delivery by an experienced and enthusiastic facilitator was identified as important. Staff identified learning and practice changes made following their training. However, observations revealed not all staff had the knowledge, attitudes and skills needed to deliver good care. Patient and carer satisfaction with care was mixed. A major barrier to training implementation was lack of resources. Supportive managers, organisational culture and strong leadership were key facilitators. Conclusion: Dementia training can lead to improved care practices. There are a range of key barriers and facilitators to implementation that must be considered. [ABSTRACT FROM AUTHOR]

Objective:To determine how care home managers negotiate the conflict between maintaining a safe environment while enabling the autonomy of residents with dementia. This is important because there is limited research with care home managers; yet, they are key agents in the implementation of national policies. Method:Semi-structured interviews were conducted with 18 managers from care homes offering dementia care in the Northwest of England. Data were analysed using a thematic analysis approach. Results:There were three areas in which care home staff reported balancing safety and risk against the individual needs of residents. First, the physical environment created a tension between safety and accessibility to the outside world, which meant that care homes provided highly structured or limited access to outdoor space. Second, care home managers reflected a balancing act between an individual's autonomy and the need to protect their residents’ dignity. Finally, care home managers highlighted the ways in which an individual's needs were framed by the needs of other residents to the extent that on some occasions an individual's needs were subjugated to the needs of the general population of a home. Conclusion:There was a strong, even dominant, ethos of risk management and keeping people safe. Managing individual needs while maintaining a safe care home environment clearly is a constant dynamic interpersonal process of negotiating and balancing competing interests for care home managers. [ABSTRACT FROM PUBLISHER]

Objectives:This study explores the specific effects of live music concerts on the clients with dementia, their families and nursing staff/caregivers. Methods:Researchers attended 22 concerts in care facilities in England and Japan. Interviews were carried out with clients with dementia, nursing staff and family members. Observations were also carried out before, during and after the concerts. All observations were recorded in field notes. Results:The effect of the concerts in both countries was seen to be beneficial to all clients and nursing staff, whether or not they attended the concert. Interviews with clients with mild to mid-stage dementia noted increased levels of cooperation, interaction and conversation. Those with more advanced forms of dementia exhibited decreased levels of agitation and anti-social behaviour. Staff members reported increased levels of care, cooperation and opportunities for assessment. Family members noted an increase in the levels of well-being in their partner/parent as well as in themselves. The study also suggested that the knowledge of musical components, an awareness of the rules of music and specific musical preferences appear to remain well beyond the time when other cognitive skills and abilities have disappeared. Conclusions:This initial study provided some further indication in terms of the uses of music as a non-pharmacological intervention for those living with all stages of dementia. These included opportunities for assessment of physical abilities as well as facilitating an increasing level of care. [ABSTRACT FROM AUTHOR]

Objectives:General practitioners (GPs) are crucial to improving timely diagnosis, but little is reported about how they perceive dementia, and whether their perceptions display any elements of stigma. The aim of this study was to explore how GPs’ perceptions of dementia map onto current conceptualizations of stigma and whether GPs feel that stigma affects timely diagnosis. Methods:Twenty-three GPs from England were interviewed by telephone. Data were analyzed by means of content analysis. This involved open coding followed by the application of a coding framework derived from the literature to explore how and to what extent their perceptions relate to stigma as well as the unique nature of their perceptions. Results:Three themes emerged from the analysis: (1) ‘making sense of dementia’, (2) ‘relating perceptions of dementia to oneself’ and (3) ‘considering the consequences of dementia’. GPs’ perceptions of dementia mapped onto current conceptualizations of stigma. Perceptions about dementia that were linked to their own existential anxiety and to a perceived similarity between people with dementia and themselves were particularly salient. GPs perceived dementia as a stigma which was gradually being overcome but that stigma still hindered timely diagnosis. They provided examples of structural discrimination within the health service, including lack of time for patients and shortcomings in training that were to the detriment of people with dementia. Conclusion:Measures to involve GPs in tackling stigma should include training and opportunities to explore how they perceive dementia, as well as support to address structural discrimination. [ABSTRACT FROM PUBLISHER]

Objectives:Much is known about the factors making caring for a spouse with dementia burdensome. However, relatively little is known about factors that help some spouses become resilient. We define resilience as ‘the process of negotiating, managing and adapting to significant sources of stress or trauma’. We aimed to assess whether spousal dementia carers can achieve resilience and to highlight which assets and resources they draw on to facilitate or hinder resilience, using an ecological framework . Method:Twenty in-depth qualitative interviews with spousal carers from two carer support groups and a care home in North West England. Results:Eight participants were resilient and 12 were not. A resilient carer was characterised as someone who stays positive and actively maintained their relationship and loved one's former self. Resilient carers were knowledgeable and well supported by family but especially friends, with whom they shared this knowledge. They were more actively engaged with services such as respite care. Conclusion:There is a need to move towards more ecological models of resilience. We propose that access to assets and resources is not always sufficient to facilitate resilience. Implications of these findings are discussed. [ABSTRACT FROM PUBLISHER]

Objectives: Researcher, clinical professional and lay understandings of the meaning of trauma may differ. An awareness of older people's perspectives on trauma may be important, given the potential for historical and cultural features to shape how the term is conceptualised among this group, thereby influencing related help-seeking behaviour. Method: Older people living in Essex, Cambridgeshire and Suffolk were interviewed about their perceptions of the term, as was a group of mental health professionals who work with the elderly. Results: Many older people regarded significant adversity as just part of life, with collectively understood methods of avoidance or limited support-seeking pointing to emotional management through non-disclosure. This position seemed further informed by views that disclosure may be self-indulgent, which is in stark contrast to the historical and cultural background in which many older people were raised. The professionals also suggested that some older people may be unused to expressing their emotions. The concept of trauma seems to be relative, with stigma and shame appearing to influence the way that responses to adversity are managed by this age group. Conculsion: We conclude that focused history taking by clinicians may be needed to help elicit symptoms of trauma among elderly patients, while at the same time services might engage in a compassionate dialogue to encourage those suffering in silence to seek help. [ABSTRACT FROM AUTHOR]