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Quality of life is an important outcome in older‐adult care. Measuring resident quality of life may offer ways to improve it and to improve quality of care. However, in the UK quality of life is rarely measured as a part of routine care. Our study aimed to understand the views of care home staff about using a quality of life instrument as a part of routine care in order to support its implementation into routine practice. In a qualitative study, we conducted 35 interviews with care home staff and two focus groups with four care home managers from three care homes in East Sussex, England. Data were collected between September 2015 and February 2016. Care staff and managers were aged on average 40 (SD = 12.2) and 43.7 (SD = 14.4) years and had worked in the care sector an average of 11.4 (SD = 10.2) and 23.7 (SD = 14.1) years, respectively. Participants were predominantly female and white British. Interviews and focus groups were analysed using thematic analysis. Findings identified two overarching themes of 'Perceived gains' and 'Implementation'. Overall, there was a lot of positivity towards using a quality of life instrument in routine practice. This positivity was an important feature in how the instrument was perceived as fitting into practice. Participants identified several barriers and discussed how to overcome them. Results from the study demonstrate that routine measurement of quality of life is positively received by care staff. They believed that measuring quality of life as a part of care practice could lead to improvements in resident quality of life, staff knowledge and understanding and care practices. The findings suggest that routinely measuring quality of life as a part of normal care could also have more far‐reaching effects on the provision of person‐centred care provided by care staff. [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: There is a lack of understanding about how adolescents perceive dementia, and what their dementia related experiences are. Without such information, it is hard to make a case for the need to raise awareness of dementia in adolescents, and the best strategies to achieve this. Methods: In a cohort of 901 adolescents (aged 13–18) from the South East of England, we explored what the experiences and perceptions of dementia were using a series of questionnaires. Descriptive data of individual items were reported, comparing differences between genders. Results: The adolescents within this study tended to have positive or neutral attitudes towards dementia, though there was evidence that a proportion of adolescents had misconceptions or held negative attitudes (e.g. 28.5% of adolescents disagreed with the statement 'In general, I have positive attitudes about people with dementia'). We also identified that the adolescents had a range of experiences of dementia including providing some form of care for someone with dementia (23.2%), though most had indirect contact with dementia through TV and movies (77.3%), or adverts (80.2%). Females nearly always had better attitudes towards dementia and had significantly more contact with dementia. Conclusions: Considering that adolescents are already forming negative attitudes and misconceptions of dementia, it is important that we raise awareness about dementia in this age group. [ABSTRACT FROM AUTHOR]

Local dementia education initiatives exist in schools but it is unclear what the wider uptake of such programmes are. A self-created survey was sent to staff in a number of secondary schools (teaching ages 11–16) across Sussex, England. Sixty schools responded to the survey (response rate = 58%). While the majority of schools expressed an interest in including some form of dementia education within their school in the future, only nine schools (15%) currently had dementia education embedded within their curriculum. Despite government calls to reduce stigma and improve attitudes towards dementia, it seems very little is being taught in secondary schools on the topic. [ABSTRACT FROM AUTHOR]

Background: The MODEM project (A comprehensive approach to MODelling outcome and costs impacts of interventions for DEMentia) explores how changes in arrangements for the future treatment and care of people living with dementia, and support for family and other unpaid carers, could result in better outcomes and more efficient use of resources.Methods: MODEM starts with a systematic mapping of the literature on effective and (potentially) cost-effective interventions in dementia care. Those findings, as well as data from a cohort, will then be used to model the quality of life and cost impacts of making these evidence-based interventions more widely available in England over the period from now to 2040. Modelling will use a suite of models, combining microsimulation and macrosimulation methods, modelling the costs and outcomes of care, both for an individual over the life-course from the point of dementia diagnosis, and for individuals and England as a whole in a particular year. Project outputs will include an online Dementia Evidence Toolkit, making evidence summaries and a literature database available free to anyone, papers in academic journals and other written outputs, and a MODEM Legacy Model, which will enable local commissioners of services to apply the model to their own populations.Discussion: Modelling the effects of evidence-based cost-effective interventions and making this information widely available has the potential to improve the health and quality of life both of people with dementia and their carers, while ensuring that resources are used efficiently. [ABSTRACT FROM AUTHOR]

Dementia-related stigma is a key barrier to people living well with dementia, leading to social isolation and poor well-being. Adolescents represent an under-researched group that will become future carers and healthcare workers for the estimated 83.2 million people who will be living with dementia by 2030. Understanding the factors involved in dementia attitude formation in adolescents is useful for the development of evidence-based anti-stigma initiatives. This study aims to identify predictors of dementia attitudes in adolescents. This is a cross-sectional study using secondary data analysis. 470 participants aged 12–15 years old from secondary schools in the Southeast of England, United Kingdom completed validated questionnaires relating to dementia attitudes (KIDS and Brief A-ADS) as well as demographic information. Multiple regressions were employed as well as a path analysis via a structural equation model to test for direct and mediatory effects. Multiple regression models revealed that being female, having higher levels of contact with dementia, and higher levels of empathy are positively associated with dementia attitudes in adolescents (p<0.05). Within the accepted structural equation model, empathy was a key mediator between contact and dementia attitudes. This study highlights the pivotal role that contact with dementia can have in influencing dementia attitudes in adolescents with empathy serving as a mediator between contact and dementia attitudes. Interventions that use contact should consider how to stimulate empathetic responses to ultimately shape dementia attitudes. [ABSTRACT FROM AUTHOR]

Background: Dementia-related stigma is a prominent barrier for people living with dementia, leading to poor well-being and social isolation. Adolescents are an under-researched group in society that may already have experience of dementia and are more susceptible to attitudinal change which makes them ideal targets for anti-stigma initiatives outlined by public health policy. For the development of evidence-based anti-stigma initiatives in adolescents, it is important to understand which socio-demographic groups are most likely to develop stigmatising attitudes and why. This study aims to identify factors of dementia-related stigma in adolescents., Methods: A total of 1,044 adolescents (aged 11-18 years) from across six regions of England were included in the analysis of this cross-sectional, survey-based study. Descriptive statistics and multiple regressions were employed to explore the association between demographic variables, modifiable factors of dementia-related stigma and the outcome of dementia-related stigma. A path analysis via a structural equation model was employed to test for direct and mediatory effects., Results: Multiple regression models revealed that younger adolescents, those with higher levels of contact with dementia, higher levels of empathy, higher levels of dementia knowledge, and higher affinity to older adults, are associated with more positive dementia attitudes in adolescents (p < 0.05). Within the accepted structural equation model, empathy, level of contact and dementia knowledge were key mediators of dementia-related stigma (p < 0.05)., Conclusion: This study highlights that modifiable factors such as level of contact, ageism, and empathy have a potentially important role in how dementia-related stigma may start to form in the adolescent years. Developing contact-based strategies that stimulate empathetic responses may be useful targets for stigma reduction initiatives for adolescents., (© 2024. The Author(s).)

Introduction: COVID-19 has placed unprecedented pressure on dementia health and social care systems worldwide. This has resulted in reduced services and support for people with dementia and their family carers. There are gaps in the evidence on the impact of the pandemic on Quality of Life (QoL). We carried out a study on the impact of the pandemic on the QoL of a group of people with dementia and their family carers who were part of a larger existing cohort study., Methods: We quantitatively measured QoL, on two occasions during the two national lockdowns in 2020 and compared these data with those obtained when they entered the study (before the pandemic). Measures used included: DEMQOL-Proxy, Clinical Dementia Rating Scale and C-DEMQOL. To understand how QoL changed over time, a repeated measures ANOVA was run for each dependent variable with the following variables entered as co-variates: duration in study, baseline dementia severity, gender of the family carer, gender of the person with dementia, family carer relationship, dementia type, living status, age of the person with dementia, and age of the family carer., Results: 248 participants took part in the study. QoL scores did not significantly decline between either time period for the person with dementia or their family carer. There was variation in subgroups; with co-resident status, carer relationship, gender of the person with dementia, age of the person with dementia, and baseline cognitive status influencing QoL outcomes in family carers., Discussion: It is striking that people with dementia and their carers did not report a decline in QoL during the pandemic or in the months following restrictions suggesting the possibility of resilience. Variation in subgroups suggests that specific groups of family carers were more vulnerable to lower QoL; indicating the need for more tailored, nuanced support during this period., Competing Interests: The authors have declared that no competing interests exisit.

Objective: To investigate the routine use of a measure of quality of life (QoL) in care homes and assess its psychometric properties when used by care staff., Design: A cross-sectional two-phase study., Setting and Participants: Data were collected from care staff in seven care homes in East Sussex, England., Method: Phase I: The ability of care staff from two care homes to use the DEMQOL-Proxy without interviewer administration was assessed using agreement analysis between a self-administered and interviewer-administered version of the instrument. Based on these findings, DEMQOL-Proxy was adapted into a new version, DEMQOL-CH, for use as a self-administered instrument in care homes. We assessed agreement between the new DEMQOL-CH and DEMQOL-Proxy to ensure DEMQOL-CH was used correctly. Phase II: A preliminary assessment of the psychometric properties of DEMQOL-CH when used routinely was completed in a further five care homes., Results: Phase I: Nineteen care staff from two care homes completed QoL measurements for residents. Systematic error was identified when staff self-completed the DEMQOL-Proxy without an interviewer. We modified the DEMOoL-Proxy to create DEMQOL-CH; this reduced the error, producing a version that could be used more accurately by care staff. Phase II: Eleven care staff from five care homes rated resident QoL routinely. DEMQOL-CH showed acceptable psychometric properties with satisfactory reliability and validity and a clear factor structure., Conclusions: The research presents positive preliminary data on the acceptability, feasibility and performance of routine QoL measurement in care homes using an adapted version of DEMQOL-Proxy, the DEMQOL-CH. Results provide evidence to support the concept that routine measurement of QoL may be possible in care homes. Research is needed to refine and test the methodology and instrument further and to explore the potential for benefits to residents, staff and care homes in larger and more representative populations., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)