Perceived and objective availability of green and blue spaces and quality of life in people with dementia: results from the IDEAL programme.

PURPOSE: The aim of this study was to investigate the associations between quality of life and both perceived and objective availability of local green and blue spaces in people with dementia, including potential variation across rural/urban settings and those with/without opportunities to go outdoors. METHODS: This study was based on 1540 community-dwelling people with dementia in the Improving the experience of Dementia and Enhancing Active Life (IDEAL) programme. Quality of life was measured by the Quality of Life in Alzheimer's Disease (QoL-AD) scale. A list of 12 types of green and blue spaces was used to measure perceived availability while objective availability was estimated using geographic information system data. Regression modelling was employed to investigate the associations of quality of life with perceived and objective availability of green and blue spaces, adjusting for individual factors and deprivation level. Interaction terms with rural/urban areas or opportunities to go outdoors were fitted to test whether the associations differed across these subgroups. RESULTS: Higher QoL-AD scores were associated with higher perceived availability of local green and blue spaces (0.82; 95% CI 0.06, 1.58) but not objective availability. The positive association between perceived availability and quality of life was stronger for urban (1.50; 95% CI 0.52, 2.48) than rural residents but did not differ between participants with and without opportunities to go outdoors. CONCLUSIONS: Only perceived availability was related to quality of life in people with dementia. Future research may investigate how people with dementia utilise green and blue spaces and improve dementia-friendliness of these spaces.

The impact of relationship quality on life satisfaction and well-being in dementia caregiving dyads: findings from the IDEAL study.

Objectives: The quality of the relationship between people with dementia and their informal caregiver maybe an important determinant of life satisfaction and well-being for both members of the dyad. Taking a dyadic perspective, the aim of this study was to examine whether self- and partner-rated relationship quality influences life satisfaction and well-being for both people with dementia and their caregivers.Design and methods: Using data from 1283 dyads in the Improving the Experience of Dementia and Enhancing Active Life (IDEAL) cohort, we examined the impact of current relationship quality on life satisfaction and well-being in dementia caregiving dyads. Data were analysed using the Actor-Partner Interdependence Model (APIM) framework.Results: Self-rated relationship quality was associated with own life satisfaction and well-being for both people with dementia and caregivers. Partner-rated relationship quality did not influence own life satisfaction or well-being for either member of the dyad.Conclusion: This study is the first to use the APIM framework to explore the dyadic associations between relationship quality and life satisfaction and well-being in a large cohort of dementia caregiving dyads. The obtained findings suggest that the individual perception of the quality of the caregiving relationship held by each member of the caregiving dyad is an important factor for that member's life satisfaction and well-being, while the partner's perception of relationship quality is not. The findings highlight the importance of considering the individual perspective of both the person with dementia and the caregiver and enabling each to maintain positive perceptions of relationship quality.

Living well with dementia: a systematic review and correlational meta-analysis of factors associated with quality of life, well-being and life satisfaction in people with dementia.

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.

Inequalities in living well with dementia-The impact of deprivation on well-being, quality of life and life satisfaction: Results from the improving the experience of dementia and enhancing active life study.

OBJECTIVES: Area level factors, such as deprivation and urban/rural settings, have been associated with variation in local resources and services and health inequality in later life. The aim of this study is to investigate the potential impact of deprivation and urban/rural areas on capability to live well with dementia and to examine whether availability of informal carers modified the associations. METHODS: The analysis was based on a large cohort study of 1547 community-dwelling people with dementia across Great Britain. Quality of life, life satisfaction, and well-being were measured as indices of "living well." Multivariate modelling was used to investigate differences in living well measures across deprivation quintiles and urban/rural areas adjusting for sociodemographic factors and number of comorbidities and stratifying by three groups: those living with a carer, those with a noncoresident carer and those without a carer. RESULTS: Negative dose-response relationships between deprivation and measures of quality of life (-2.12; 95% CI: -3.52, -0.73), life satisfaction (-1.27; 95% CI: -2.70, 0.16), and well-being (-5.24; 95% CI: -10.11, -0.36) were found in participants living with a carer. The associations were less clear in those with a noncoresident carer and those without a carer but these two groups generally reported lower scores on living well indicators than participants living with a carer. There was no urban/rural difference. CONCLUSIONS: The findings suggest inequalities in living well with dementia according to levels of deprivation. Additional resources are needed to improve postdiagnostic care in highly deprived areas and support those who have no informal carer.

Dualities of dementia illness narratives and their role in a narrative economy.

The concept of 'narrative economies' has recently been proposed as a set of exchange relationships that, through biography and story-telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre-existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia - like our participants - being called upon to account for their experience, as a means of developing a politicised 'collective illness identity'. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.

Goal-setting to Promote a Healthier Lifestyle in Later Life: Qualitative Evaluation of the AgeWell Trial.

OBJECTIVE: We report a mixed method evaluation of the feasibility and implementation of the AgeWell goal-setting intervention to promote healthy ageing later life. METHOD: Researcher field notes, goal-setting interview content, and semi-structured interviews with participants were content analysed to review trial implementation and participants' perspective on the goal-setting and mentoring intervention. RESULTS: 75 people were recruited: 21 in the goal-setting and 22 in the goal-setting with mentoring arms of the intervention. Goal-setting was feasible in the main domains of interest. Adherence to the protocol was good and the mentoring schedule was adhered to. Participants reported satisfaction with their goal attainment, but barriers for non-achievement were also identified. Recommendations for small changes to the intervention included reducing the number of goals. CONCLUSIONS: Participants understood the goal-setting process, and were able to set realistic and achievable lifestyle goals. The intervention and the procedures were acceptable but changes in how goal-setting is both introduced and monitored are needed for wider implementation. CLINICAL IMPLICATIONS: Goal-setting can be a useful process to help people alter their lifestyle to allow them to age more successfully and reduce risk factors associated with dementia.

Social class, dementia and the fourth age.

Research addressing social class and dementia has largely focused on measures of socioeconomic status as causal risk factors for dementia and in observed differences in diagnosis, treatment and care. This large body of work has produced important insights but also contains numerous problems and weaknesses. Research needs to take account of the ways in which ageing and social class have been transformed in tandem with the economic, social and cultural coordinates of late modernity. These changes have particular consequences for individual identities and social relations. With this in mind this article adopts a critical gaze on research that considers interactions between dementia and social class in three key areas: (i) epidemiological approaches to inequalities in risk (ii) the role of social class in diagnosis and treatment and (iii) class in the framing of care and access to care. Following this, the article considers studies of dementia and social class that focus on lay understandings and biographical accounts. Sociological insights in this field come from the view that dementia and social class are embedded in social relations. Thus, forms of distinction based on class relations may still play an important role in the lived experience of dementia.

Illness representations in caregivers of people with dementia.

OBJECTIVES: Illness representations shape responses to illness experienced by the self or by others. The illness representations held by family members of those with long-term conditions such as dementia influence their understanding of what is happening to the person and how they respond and provide support. The aim of this study is to explore components of illness representations (label, cause, control and timeline) in caregivers of people with dementia. METHOD: This was an exploratory study; the data reported came from the Memory Impairment and Dementia Awareness Study (MIDAS). Data from semi-structured interviews with 50 caregivers of people with dementia were analysed using content analysis. RESULTS: The majority of caregivers gave accounts that appeared to endorse a medical/diagnostic label, although many used different terms interchangeably. Caregivers differentiated between direct causes and contributory factors, but the predominant explanation was that dementia had a biological cause. Other perceived causes were hereditary factors, ageing, lifestyle, life events and environmental factors. A limited number of caregivers were able to identify things that people with dementia could do to help manage the condition, while others thought nothing could be done. There were varying views about the efficacy of medication. In terms of timeline, there was considerable uncertainty about how dementia would progress over time. CONCLUSION: The extent of uncertainty about the cause, timeline and controllability of dementia indicated that caregivers need information on these areas. Tailored information and support taking account of caregivers' existing representations may be most beneficial.

Defining continuity of care from the perspectives of mental health service users and professionals: an exploratory, comparative study.

BACKGROUND: Continuity of care (COC) is central to the organization and delivery of mental health services. Traditional definitions have excluded service users, and this lack of involvement has been linked to poor conceptual clarity surrounding the term. Consequently, very little is known about the differences and similarities in the conceptualization of COC by mental health service users and professionals. OBJECTIVE: To explore and compare mental health service users' and professionals' definitions of COC. METHODS: Using an exploratory, qualitative design, five focus groups with 32 service users each met twice. Data were analysed thematically to generate a service user-defined model of COC. In a cross-sectional survey, health and social care professionals (n = 184) defined COC; responses were analysed thematically. Service user and professional definitions were conceptually mapped and compared to identify similarities and differences. RESULTS: There was crossover between the service user and professional derived models of COC. Both contained temporal, quality, systemic, staff, hospital and needs-related elements of COC. Service users prioritized access, information, peer support and avoiding services; health professionals most frequently referred to staff, cross-sectional and temporal COC. Service users alone identified service avoidance, peer support and day centres as COC elements; professionals alone identified cross-sectional working. CONCLUSIONS: Important similarities and differences exist in service user and professional conceptualizations of COC. Further research is necessary to explore these differences, prior to integrating service user and professional perspectives in a validated COC framework which could enable the development and evaluation of interventions to improve COC, informing policy and practice.

Beyond the Unitary State: Multi-Level Governance, Politics, and Cross-Cultural Perspectives on Animal Welfare.

It is argued that extant cross-cultural research on animal welfare often overlooks or gives insufficient attention to new governance theory, civil society, politics, and the realities of devolved or (quasi-)federal, multi-level governance in the modern state. This paper synthesizes relevant social theory and draws on new empirical findings of civil society accounts of campaigning on animal welfare policies and law in the United Kingdom. It is presented as a corrective to arguably reductive, earlier unitary state-based analyses. Our core, evidence-based argument is that cognizance of civil society activism and the contrasting institutional governance structures and political cultures of constituent nations in unitary states-such as the UK-are providing opportunities for the territorialization of legally grounded animal welfare regimes, and culturally distinctive practices.

Understanding service user-defined continuity of care and its relationship to health and social measures: a cross-sectional study.

BACKGROUND: Despite the importance of continuity of care [COC] in contemporary mental health service provision, COC lacks a clearly agreed definition. Furthermore, whilst there is broad agreement that definitions should include service users' experiences, little is known about this. This paper aims to explore a new construct of service user-defined COC and its relationship to a range of health and social outcomes. METHODS: In a cross sectional study design, 167 people who experience psychosis participated in structured interviews, including a service user-generated COC measure (CONTINU-UM) and health and social assessments. Constructs underlying CONTINU-UM were explored using factor analysis in order to understand service user-defined COC. The relationships between the total/factor CONTINU-UM scores and the health and social measures were then explored through linear regression and an examination of quartile results in order to assess whether service user-defined COC is related to outcome. RESULTS: Service user-defined COC is underpinned by three sub-constructs: preconditions, staff-related continuity and care contacts, although internal consistency of some sub-scales was low. High COC as assessed via CONTINU-UM, including preconditions and staff-related COC, was related to having needs met and better therapeutic alliances. Preconditions for COC were additionally related to symptoms and quality of life. COC was unrelated to empowerment and care contacts unrelated to outcomes. Service users who had experienced a hospital admission experienced higher levels of COC. A minority of service users with the poorest continuity of care also had high BPRS scores and poor quality of life. CONCLUSIONS: Service-user defined continuity of care is a measurable construct underpinned by three sub-constructs (preconditions, staff-related and care contacts). COC and its sub-constructs demonstrate a range of relationships with health and social measures. Clinicians have an important role to play in supporting service users to navigate the complexities of the mental health system. Having experienced a hospital admission does not necessarily disrupt the flow of care. Further research is needed to test whether increasing service user-defined COC can improve clinical outcomes. Using CONTINU-UM will allow researchers to assess service users' experiences of COC based on the elements that are important from their perspective.

Class and lifestyle 'lock-in' among middle-aged and older men: a Multiple Correspondence Analysis of the British Regional Heart Study.

Health lifestyles are collective patterns of health risk behaviour that develop within a social habitus. An important area for research is the extent to which health lifestyles become more individualised over time and as people age, or whether health lifestyles remain socially structured. This article presents findings from a Multiple Correspondence Analysis of the British Regional Heart Study. Our findings suggest that smoking and alcohol use retain a strong class patterning as men age (suggesting some support for the long-term importance of social structures in old age). This indicates that, in later life, some forms of class-related health lifestyles become fixed or 'locked in'. In contrast there is evidence to suggest that, for exercise, class becomes less important as people age (suggesting either some support for growing individualisation and or important ageing effects). Further studies are required to examine different forms of health lifestyle in later life in relation to forms of cultural and economic capital. This study provides evidence in support of attempts to theorise health lifestyles in terms of collectivities. Furthermore, the concept of selective lifestyle 'lock-in' may be a useful way of understanding the relationship between class and health lifestyles in old age.

Disclosing clinical performance: the case of cardiac surgery.

PURPOSE: In recent years, the clinical performance of named cardiac surgeons in England has been disclosed. This paper aims to explore the nature and impact of disclosure of clinical performance. DESIGN/METHODOLOGY/APPROACH: The paper draws on literature from across the social sciences to assess the impact of disclosure, as a form of transparency, in improving clinical performance. Specifically, it employs the "programme theory" of disclosure. FINDINGS: The "programme theory" of disclosure involves identification, naming, public sanction and recipient response. Named individual (consultant) surgeons have been identified through disclosure but this masks the contribution of the clinical team, including junior surgeons. Mortality is the prime performance measure but given low mortality rates, there are problems interpreting this measure. The naming of surgeons has been achieved through disclosure on web sites, developed between the health-care regulator and the surgical profession itself. However, participation remains voluntary. The intention of disclosure is that interested parties (especially patients) will shun poorly performing surgeons. However, these parties' willingness and ability to exercise this sanction appears limited. Surgeons' responses are emergent but about a quarter of surgeons are not participating currently. Fears that surgeons would avoid high-risk patients seem to have been unrealised. While disclosure may have a small effect on individual reputations, the surgical profession as a whole has embraced disclosure. ORIGINALITY/VALUE: While the aim of disclosure has been to create a transparent medical system and to improve clinical performance, disclosure may have the opposite effect, concealing some performance issues and possibly strengthening professional autonomy. Disclosure therefore represents greater transparency in health-care but it is uncertain whether it will improve performance in the ways that the policy intends.

Caregivers' beliefs about dementia: findings from the IDEAL study.

Objective: Informal caregivers of people with dementia develop their own beliefs about the condition, referred to as Dementia Representations (DRs), as they try to make sense of the changes they are observing. The first aim of this study was to provide a profile of the types of DRs held by caregivers. The second aim was to examine the impact of caregivers' DRs on their well-being, satisfaction with life (SwL) and caregiving stress. Methods: Participants were 1264 informal caregivers of people in the mild-to-moderate stages of dementia from time-point 1 of the IDEAL cohort study. Measures: DRs were measured using questionnaire items covering: Identity, Cause, Control, and Timeline. Results: Almost half (49.2%) of caregivers used a diagnostic term to describe the person's condition, although 93.4% of caregivers stated they were aware of the diagnosis. Higher well-being, SwL, and lower caregiving stress were associated with the use of an identity term relating to specific symptoms of dementia, attributing the cause to ageing or not knowing the cause, and believing the condition would stay the same. Lower well-being, SwL, and higher caregiving stress were associated with believing there was little that could be done to control the effects of the condition. Conclusion: Healthcare professionals should assess and gain an understanding of caregivers' DRs in order to provide more tailored information and support.

With an attack I associate it more with going into hospital: understandings of asthma and psychosocial stressors; are they related to use of services?

Asthma is still a major cause of morbidity and mortality. Patients who use hospital services frequently tend to have more severe asthma and lack formal support. Attitudes to self-management also tend to differ and qualitative studies of frequent attenders have identified differing views of the appropriateness of service use between patients and their physicians. We undertook a qualitative study of patients with severe asthma admitted and not admitted to hospital in a 12-month period in the UK. The aim of the study was to investigate the relationship between perception of life events, psychosocial factors, coping and asthma admission in these two groups of patients. We interviewed 50 patients (aged 16 and over) admitted to two large teaching hospitals in London with asthma exacerbations, 25 patients with similar levels of asthma severity (step 3 or higher of the British Thoracic Society guidelines) sampled in General Practice and 19 general practitioners (GPs). Data were analysed using an adapted framework analysis. Patients admitted to hospital reported high levels of psychosocial problems and life events but tended to make few connections between these and their asthma attacks or their ability to manage their asthma. Patients reporting frequent hospital use tended to value professionals working in hospitals while reporting poor relationships with GPs; views that appeared related to delays in seeking help from primary care. Among GPs, knowledge of patients having attended hospital was generally poor, although they appeared more aware of those who were high users of General Practice (whether they were high attenders at hospital or not). GPs perceived stressful life events in patients with asthma to compound existing dispositions and be related to poor control and poor adherence. These findings suggest that vulnerable patient groups often face poor material circumstances and chaotic lives, impacting on their capacity to manage their illness and on their ability to derive benefit from primary care. Policy interventions aimed at reducing 'unnecessary' admissions will need to be tailored to the psychosocial circumstances and health beliefs of vulnerable patient groups.

Dignity in the care of older people - a review of the theoretical and empirical literature.

BACKGROUND: Dignity has become a central concern in UK health policy in relation to older and vulnerable people. The empirical and theoretical literature relating to dignity is extensive and as likely to confound and confuse as to clarify the meaning of dignity for nurses in practice. The aim of this paper is critically to examine the literature and to address the following questions: What does dignity mean? What promotes and diminishes dignity? And how might dignity be operationalised in the care of older people?This paper critically reviews the theoretical and empirical literature relating to dignity and clarifies the meaning and implications of dignity in relation to the care of older people. If nurses are to provide dignified care clarification is an essential first step. METHODS: This is a review article, critically examining papers reporting theoretical perspectives and empirical studies relating to dignity. The following databases were searched: Assia, BHI, CINAHL, Social Services Abstracts, IBSS, Web of Knowledge Social Sciences Citation Index and Arts & Humanities Citation Index and location of books a chapters in philosophy literature. An analytical approach was adopted to the publications reviewed, focusing on the objectives of the review. RESULTS AND DISCUSSION: We review a range of theoretical and empirical accounts of dignity and identify key dignity promoting factors evident in the literature, including staff attitudes and behaviour; environment; culture of care; and the performance of specific care activities. Although there is scope to learn more about cultural aspects of dignity we know a good deal about dignity in care in general terms. CONCLUSION: We argue that what is required is to provide sufficient support and education to help nurses understand dignity and adequate resources to operationalise dignity in their everyday practice. Using the themes identified from our review we offer proposals for the direction of future research.