Dementia Screening in Rural Kenya: The Prevalence and Impact of Screening Positive for Dementia.

INTRODUCTION: In Kenya, there is a lack of data on the number of people with dementia. In this article, we aim to estimate the number of community-dwelling older adults (aged 60 years and above) that are potentially living with dementia in rural Kenya. METHODS: Recruitment of older adults occurred through adopting a convenience approach based on the catchment areas served by ten trained community health workers. Screening was conducted using the Brief Community Screening Instrument for Dementia (CSI-D), in which prevalence ratios were reported. Regression analyses were run to understand the association between screening outcome and wellbeing, social isolation, and employment status (adjusted for age, sex, literacy, geography, and social status). RESULTS: Of the 3,546 older adults who were screened for dementia, 652 screened positive (PR = 0.18, 95% CIs: 0.17-0.20). Back estimating screen positives based on established sensitivity and specificity of the tool against a gold standard (clinical diagnosis), yielded a prevalence of 9.4% (0.09, 95% CIs: 0.08-0.11). Screening positive for dementia was associated with poorer quality of life (B = -0.17, p < 0.001) and loneliness (B = 0.28, p < 0.001). CONCLUSION: There are potentially 258,000 older adults living with dementia in Kenya, who likely have poorer outcomes. We need to encourage a timely diagnosis and develop better ways to support people living with dementia in Kenya and other resource-limited settings.

Motivators for family carers of persons with dementia in Kenya.

OBJECTIVES: The number of people with dementia is on the rise in Kenya and across Africa. Although family carers act as the main providers of dementia care in Kenya, there is still a significant knowledge gap regarding why family members care for someone with dementia. This study explores perceived drivers of care for people with dementia in a rural Kenyan context. METHODS: Participants were recruited in Makueni County, Kenya. Primary data were derived from a focus group discussion (FGD) and five individual interviews with family carers of people with dementia. To complement interpretation, triangulation occurred through using data from FGDs with healthcare workers and members of the general public. All audio recordings were transcribed verbatim and inductive thematic analysis performed using NVIVO 12. RESULTS: Using the Positioning Theory, we sought to generate information pertaining to motivation for becoming a family carer. Five themes emerged from the analysis and included: (i) self-fulfillment, (ii) familial obligation, (iii) cultural and religious beliefs, (iv) reciprocity, and (v) societal pressures. These themes described the nature of care given to people with dementia, based on what the participants perceived as compelling and/or motivating factors. CONCLUSIONS: Our findings describe the unique motivators of family carers for people with dementia in Kenya. The ability to find meaning in the caregiving experience could contribute to development of effective support systems, interventions and policies for dementia carers with the aim of improving the overall quality of dementia care in Kenya.

Physical Activity Patterns Within Dementia Care Dyads.

Previous research has explored the physical activity habits of people with dementia and their family carers separately, with little consideration of how physical habits are associated within dyads. In this observational study, we sought to explore the relationship between people with dementia and their carers' physical activity, at a group level and at a dyadic level. Twenty-six participant dyads (persons with dementia and their carer spouses) were asked to wear an accelerometer for 30 days continuously. Comparisons were made at a group level and a dyadic level. People with dementia did not participate in significantly more moderate to vigorous physical activity (M = 15.44 min/day; SD = 14.40) compared with carers (M = 17.95 min/day; SD = 17.01). Within dyads, there were moderately strong associations between daily moderate to vigorous physical activity (r = .48-.54), but not with overall activity levels (r = .24). Despite physical activity habits remaining relatively low within people with dementia and carers, respectively, moderate to vigorous physical activity levels appear to be correlated within dyads. Understanding mutual influence on physical activity levels within dyads is an important pathway to promote an active lifestyle.

Experiences of caregivers of people with dementia in Indonesia: A focus group study.

BACKGROUND: Many people with dementia are reliant on family caregivers to provide daily care to maintain quality of life and dignity. As a result, caregivers can experience increased burden, poorer health outcomes and increased stigma. To date, the experiences of caregivers of people with dementia has not been explored within an Indonesian context. AIMS: This study aims to understand the experience of caregivers of people with dementia in Indonesia and better understanding of the stigma associated with dementia. MATERIALS AND METHODS: This qualitative study is embedded within the Strengthening Responses to Dementia in Developing Countries project. Focus Group Discussions were held with dementia caregivers residing in Jakarta, Indonesia. Inductive thematic analysis was used to analyse the transcripts. RESULTS: Nineteen caregivers of people with dementia participated in the Focus Group Discussions. Themes identified included: (1) Understanding of dementia, (2) Reaction to care, and (3) Seeking a diagnosis. DISCUSSION: A perceived lack of understanding about dementia amongst the caregivers, ultimately shaped caregivers experience of care. This included negative reactions to care leading to internalised stigma (e.g., fear and shame). Misconceptions that dementia was due to spiritual and mystical reasons were particularly stigmatising. CONCLUSION: In Indonesia, families are providing care to people with dementia in an environment in which there is a lack of understanding that can lead to misdiagnosis, feelings of fear and shame. Efforts to raise address stigma and misunderstanding among the general public and healthcare professionals could be of particular value to support people with dementia and reduce the fear and shame that they can experience.

Effects of Motor Learning Interventions on Walking Performance and Physical Function in Older Adults With Cognitive Impairment and Dementia: A Systematic Review and Meta-Analysis.

Older adults with cognitive impairment have deficits in executive systems that affect their gait automaticity. The aim of the meta-analysis and systematic review was to examine the effects of interventions focus on only motor learning principles on gait performance and physical functions (e.g., dynamic balance). After inspections of 879 articles, 11 relevant studies were selected for systematic review and meta-analysis. The PEDro scale and Modified Downs and Black checklist were used to assess the quality of studies, and a random-effect model was used at a 95% confidence interval for calculating pooled effect sizes. The results of this systematic review and meta-analysis showed that motor learning interventions increased gait speed, cadence, stride length, and reduced gait cognitive cost but did not affect gait variability and physical function. In conclusion, practitioners should pay attention more to the potential benefits of motor learning interventions in rehabilitating older adults with cognitive impairment.

Study of mirtazapine for agitated behaviours in dementia (SYMBAD): a randomised, double-blind, placebo-controlled trial.

BACKGROUND: Agitation is common in people with dementia and negatively affects the quality of life of both people with dementia and carers. Non-drug patient-centred care is the first-line treatment, but there is a need for other treatment when this care is not effective. Current evidence is sparse on safer and effective alternatives to antipsychotics. We assessed the efficacy and safety of mirtazapine, an antidepressant prescribed for agitation in dementia. METHODS: This parallel-group, double-blind, placebo-controlled trial-the Study of Mirtazapine for Agitated Behaviours in Dementia trial (SYMBAD)-was done in 26 UK centres. Participants had probable or possible Alzheimer's disease, agitation unresponsive to non-drug treatment, and a Cohen-Mansfield Agitation Inventory (CMAI) score of 45 or more. They were randomly assigned (1:1) to receive either mirtazapine (titrated to 45 mg) or placebo. The primary outcome was reduction in CMAI score at 12 weeks. This trial is registered with ClinicalTrials.gov, NCT03031184, and ISRCTN17411897. FINDINGS: Between Jan 26, 2017, and March 6, 2020, 204 participants were recruited and randomised. Mean CMAI scores at 12 weeks were not significantly different between participants receiving mirtazapine and participants receiving placebo (adjusted mean difference -1·74, 95% CI -7·17 to 3·69; p=0·53). The number of controls with adverse events (65 [64%] of 102 controls) was similar to that in the mirtazapine group (67 [66%] of 102 participants receiving mirtazapine). However, there were more deaths in the mirtazapine group (n=7) by week 16 than in the control group (n=1), with post-hoc analysis suggesting this difference was of marginal statistical significance (p=0·065). INTERPRETATION: This trial found no benefit of mirtazapine compared with placebo, and we observed a potentially higher mortality with use of mirtazapine. The data from this study do not support using mirtazapine as a treatment for agitation in dementia. FUNDING: UK National Institute for Health Research Health Technology Assessment Programme.

Cost-effectiveness of mirtazapine for agitated behaviors in dementia: findings from a randomized controlled trial.

OBJECTIVES: To examine the costs and cost-effectiveness of mirtazapine compared to placebo over 12-week follow-up. DESIGN: Economic evaluation in a double-blind randomized controlled trial of mirtazapine vs. placebo. SETTING: Community settings and care homes in 26 UK centers. PARTICIPANTS: People with probable or possible Alzheimer's disease and agitation. MEASUREMENTS: Primary outcome included incremental cost of participants' health and social care per 6-point difference in CMAI score at 12 weeks. Secondary cost-utility analyses examined participants' and unpaid carers' gain in quality-adjusted life years (derived from EQ-5D-5L, DEMQOL-Proxy-U, and DEMQOL-U) from the health and social care and societal perspectives. RESULTS: One hundred and two participants were allocated to each group; 81 mirtazapine and 90 placebo participants completed a 12-week assessment (87 and 95, respectively, completed a 6-week assessment). Mirtazapine and placebo groups did not differ on mean CMAI scores or health and social care costs over the study period, before or after adjustment for center and living arrangement (independent living/care home). On the primary outcome, neither mirtazapine nor placebo could be considered a cost-effective strategy with a high level of confidence. Groups did not differ in terms of participant self- or proxy-rated or carer self-rated quality of life scores, health and social care or societal costs, before or after adjustment. CONCLUSIONS: On cost-effectiveness grounds, the use of mirtazapine cannot be recommended for agitated behaviors in people living with dementia. Effective and cost-effective medications for agitation in dementia remain to be identified in cases where non-pharmacological strategies for managing agitation have been unsuccessful.

Factors associated with change over time in quality of life of people with dementia: longitudinal analyses from the MODEM cohort study.

BACKGROUND: Research to date offers mixed evidence about the relationship between quality of life and severity of cognitive impairment in people with dementia. We aimed to investigate longitudinal changes in patient- and proxy-rated health-related quality of life (HRQL) by severity of dementia and explore factors associated with changes in HRQL over a one-year period. We used data from the MODEM longitudinal cohort study which recruited dyads of persons with clinically diagnosed dementia and their principal carer and interviewed them face-to-face at baseline and again 1 year later. METHODS: Quota sampling was used to generate balanced numbers (target n = 100 for each severity level) of people with mild cognitive impairment (20+ on the standardised Mini-Mental State Examination (sMMSE)), moderate cognitive impairment (score 10 to 19), and severe cognitive impairment (score 0 to 9). Persons with dementia without an identifiable family carer or other informant (e.g., a formal/professional/paid carer) were excluded from the study. Participants answered a series of questions measuring their HRQL: DEMQOL, DEMQOL-proxy, EQ-5D-3 L, EQ-5D-3L proxy. Multiple regression models were built to understand the effects of baseline demographics and dementia symptoms (cognitive impairment, neuropsychiatric symptoms) on change in HRQL over 1 year. RESULTS: Two hundred and forty-three dyads of people with clinically diagnosed dementia and carers completed baseline and follow-up interviews. Most measures of HRQL remaining relatively stable between time-points, but one index of HRQL, EQ-5D proxy, significantly declined. Depending on the HRQL measure, different factors were associated with change in HRQL. The only factor consistently associated with decline in HRQL (when compared to improvement) was having a diagnosis of a non-Alzheimer's dementia. CONCLUSIONS: Deterioration in HRQL is not an inevitable part of the dementia journey. However, people with non-Alzheimer's dementias may be more susceptible to HRQL decline. This may indicate that those with non-Alzheimer's dementia may benefit from specific support focussed on maintaining their quality of life.

The Relationship Between Physical Activity and Health-Related Quality of Life in People With Dementia: An Observational Study.

Recent research suggests the positive effect of physical activity on health-related quality of life in people with dementia may be mediated through improved activities of daily living and reduced depressive symptoms. One hundred and twenty-four people with dementia and their informal carers were recruited from the South East of England for this observational study. A subset of participants wore an accelerometer for 30 days. A series of bivariate analyses were completed, alongside mediation analyses. In people with mild to moderate severity dementia, weak positive associations were widely reported between physical activity indices and health-related quality of life, though only a single association reached statistical significance (rs = .25, p = .03). Mediation analysis revealed no significant indirect effects across the models after controlling for cognition. Future research needs to explore such relationships with a greater emphasis on the modality and psychosocial components of physical activity rather than just frequency, duration, and intensity.

Cross-cultural adaptation of the EAST and CASE screening tools for elder abuse in South Africa.

Elder abuse is globally considered a hidden problem with great variations in its conceptualization across cultures, non-uniformity in understanding, and manifestations of abuse and neglect. Currently, there are no validated or culturally adapted screening measures for elder abuse in South Africa. The aim of this study was to test the cultural appropriateness of the Elder Abuse Screening Tool (EAST) and the Caregiver Abuse Screen (CASE) in two regions and four languages in South Africa. Using a cognitive interviewing methodology, 23 carers and 19 older adults were interviewed. Findings show that questions in the EAST and CASE are generally well understood, but that adaptations of both tools are necessary for use within South Africa. Fear, knowledge, and experience of crime also showed that strangers, like family, deliberately use deception to build trust and abuse. Further validation is needed to determine suitable scoring and use by health and social care practitioners.

A comparative study of the effect of the Time for Dementia programme on medical students.

BACKGROUND: Traditional healthcare education typically focuses on short block clinical placements based on acute care, investigations and technical aspects of diagnosis and treatment. It may therefore fail to build the understanding, compassion and person-centred empathy needed to help those with long-term conditions, like dementia. Time for Dementia was developed to address this. METHOD: Parallel group comparison of two cohorts of UK medical students from universities, one participating in Time for Dementia (intervention group) and one not (control group). In Time for Dementia students visit a person with dementia and their family in pairs for 2 hours three times a year for 2 years, the control group received their normal curriculum. RESULTS: In an adjusted multilevel model (intervention group n = 274, control n = 112), there was strong evidence supporting improvements for Time for Dementia participants in: total Approaches to Dementia Questionnaire score (coefficient: 2.19, p = 0.003) and its person-centredness subscale (1.32, p = 0.006) and weaker evidence in its hopefulness subscale (0.78, p = 0.070). There was also strong evidence of improvement in the Dementia Knowledge Questionnaire (1.63, p < 0.001) and Dementia Attitudes Scale (total score: 6.55, p < 0.001; social comfort subscale: 4.15, p < 0.001; dementia knowledge subscale: 3.38, p = 0.001) scores. No differences were observed on the Alzheimer's Disease Knowledge Scale, the Medical Condition Regard Scale or the Jefferson Scale of Empathy. DISCUSSION: Time for Dementia may help improve the attitudes of medical students towards dementia promoting a person-centred approach and increasing social comfort. Such patient-focused programmes may be a useful complement to traditional medical education.

Psychometric properties and feasibility of use of dementia specific quality of life instruments for use in care settings: a systematic review.

BACKGROUND: Over 400,000 people live in care home settings in the UK. One way of understanding and improving the quality of care provided is by measuring and understanding the quality of life (QoL) of those living in care homes. This review aimed to identify and examine the psychometric properties including feasibility of use of dementia-specific QoL measures developed or validated for use in care settings. DESIGN: Systematic review. METHODS: Instruments were identified using four electronic databases (PubMed, PsycINFO, Web of Science, and CINAHL) and lateral search techniques. Searches were conducted in January 2017. Studies which reported on the development and/or validation of dementia specific QoL instruments for use in care settings written in English were eligible for inclusion. The methodological quality of the studies was assessed using the COSMIN checklist. Feasibility was assessed using a checklist developed specifically for the review. RESULTS: Six hundred and sixteen articles were identified in the initial search. After de-duplication, screening and further lateral searches were performed, 25 studies reporting on 9 dementia-specific QoL instruments for use in care home settings were included in the review. Limited evidence was available on the psychometric properties of many instruments identified. Higher-quality instruments were not easily accessible or had low feasibility of use. CONCLUSIONS: Few high-quality instruments of QoL validated for use in care home settings are readily or freely available. This review highlights the need to develop a well-validated measure of QoL for use within care homes that is also feasible and accessible.

Perceptions of dementia amongst the general public across Latin America: a systematic review.

Introduction: Perceptions of dementia are important determinants of support, treatment and care received in the dementia community. Understanding these perceptions are vital for regions such as Latin America, where there is a rapid increase in people living with dementia. The aim of this study is to review and synthesise the general public's perceptions of dementia in Latin America, what factors are associated with these perceptions, and how they differ between countries in the region.Methods: Searches were completed across five databases (Medline, SCOPUS, PsychINFO, SciELO, and WoS). Studies were required to capture attitudes or knowledge of dementia in the general public residing within Latin America. English, Spanish and Portuguese search terms were used. Results were synthesised narratively.Results: About 1574 unique records were identified. Following lateral searches, de-duplication and screening, six articles (four studies) met the inclusion criteria for this review. All the studies were quantitative research from Brazil (median, n = 722). There was evidence of a limited to moderate knowledge of dementia, though a significant minority had negative or stigmatising attitudes. Only higher levels of education were consistently associated with better attitudes and knowledge of dementia in the region.Conclusion: There is a need for more in-depth research about attitudes of the general public across Latin America, particularly outside of São Paulo state, Brazil. There appears to be a greater need to raise awareness of dementia amongst less educated Latin American groups.

Barriers, motivators and facilitators of physical activity in people with dementia and their family carers in England: dyadic interviews.

INTRODUCTION: 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. METHOD: 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. RESULTS: 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. CONCLUSION: 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.

Patient experience and satisfaction with remote memory assessment: Responding to clinical need in times of COVID-19 restrictions.

BACKGROUND: The suspension of memory services during the COVID-19 pandemic delayed dementia diagnosis and access to early intervention. Some services responded to the challenge by developing a remote memory assessment pathway to comply with reduced social contact measures to protect vulnerable patients. The aim of the study was to establish whether remote model is considered a satisfactory experience within the context of the COVID-19 pandemic and to understand the factors associated with patient and carer satisfaction of remote pathway. METHOD: 73 participants recruited from patients referred to memory clinic in West Sussex, who were assessed over a video or telephone. Participants completed an 11-item questionnaire capturing satisfaction across a range of elements, contextual items (the impact of the pandemic, loneliness, previous experience of using teleconference technology and diagnosis), as well as 3 dimensions from Patient Experience Questionnaire. Descriptive statistics are reported at a whole sample level, separated by patient and carer status. A hypothesis driven set of bivariate analyses (Spearman's rank) was used to understand the association between overall satisfaction and key independent factors across the whole sample. RESULTS: 73 participants were typically older adults (M=68.5, SD=13.3) and female (n=40, 54.8%). The patient was more likely to be older, feel lonely within the past week and to have used video call software when compared to the carer (p> 0.05). Participants were generally satisfied with the remote pathway with 95.8% (n=69) agreeing or strongly agreeing with the statement "Overall, I was satisfied with the assessment". Patients and carers did not significantly differ on any satisfaction response, apart from the ease of use of technology, in which carers were more likely to find the technology easy to use (U= 432.5; p=0.01). Worry about contracting COVID and communication experience was positively associated with overall satisfaction, whilst perceived communication barriers were significantly negatively associated with overall satisfaction. CONCLUSIONS: Remote memory assessment was a positive and satisfactory experience for most patient and carers. The remote pathway should be considered as an option available during and beyond the pandemic to improve access and patient choice of assessment modality.

The development and validation of the adolescent level of contact with dementia scale.

OBJECTIVES: As the number of people living with dementia increases, reducing stigma has become a policy priority. One way of decreasing stigma is through contact with the stigmatised group. However, the impact of this is difficult to establish due to a lack of validated measures suitable for adolescents. The aim of this study was to develop and validate a level of contact questionnaire designed to assess adolescents' contact with people living with dementia. METHODS: Participants were recruited from five schools in two studies (N = 446 and N = 488) and completed the preliminary 11-item version of the adolescent level of contact of dementia (ALoCD). RESULTS: Study 1 explored the factor structure of the ALoCD, revealing two factors 'direct contact' and 'indirect contact'. Study 2 confirmed the structure of the ALoCD and tested for discriminant validity. These two studies resulted in a 9-item scale that showed adequate internal consistency (α = .89, α = .62) and discriminant validity between those who did and did not live with a person with dementia. CONCLUSION: The development of this scale enables assessment of direct (eg, living with a person with dementia) and indirect (watching a TV show about dementia) contact with dementia, and the extent of this contact. This initial validation suggests a psychometrically sound scale but further research should be undertaken to fully explore the properties of the scale.

DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND): A protocol paper.

OBJECTIVES: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers. METHOD: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care: WS1: Recruitment and follow-up of the DETERMIND cohort-900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years. WS2: Investigation of the extent of inequalities in access to dementia care. WS3: Relationship between use and costs of services and outcomes. WS4: Experiences of self-funders of care. WS5: Decision-making processes for people with dementia and carers. WS6: Effect of diagnostic stage and services on outcomes. WS7: Theory of Change informed strategy and actions for applying the research findings. OUTCOMES: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia.

The effect of a dementia awareness class on changing dementia attitudes in adolescents.

BACKGROUND: Current evidence suggests that negative and stigmatising attitudes towards dementia may develop at a young age. There are a number of dementia education and awareness initiatives aimed at reducing stigma, though they have not been robustly evaluated to establish the impact on dementia attitudes or suitability in adolescent populations. This study explored the efficacy and satisfaction of one such initiative (Dementia Friends) in a British adolescent sample. METHODS: 301 adolescents (M = 12.6 years old, SD = 0.73) were assigned to either receive Dementia Friends (a 60-min interactive class that teaches about dementia and its effects on people's lives) or education as usual. All participants completed a series of validated questionnaires pre- and post-intervention, related to dementia attitudes (Brief A-ADS and KIDS). RESULTS: Adolescents in the dementia awareness group showed little to no improvements between time-points. The change scores in the dementia awareness group did not significantly differ to the control group based on both KIDS (d = - 0.003, p = 0.98) and Brief A-ADS (d = 0.14, p = 0.13) measures. There was no Group x Time effect after controlling for confounding variables. CONCLUSIONS: Dementia Friends is successful in terms of reach and impact, though this study suggests that it may fall short of achieving its goal of improving attitudes towards dementia. Importantly, Dementia Friends did not have a negative effect on attitudes, and the majority of adolescents enjoyed the sessions. It is important that these findings are replicated in a larger randomised-controlled study.

Disease severity accounts for minimal variance of quality of life in people with dementia and their carers: analyses of cross-sectional data from the MODEM study.

BACKGROUND: Due to the progressive nature of dementia, it is important to understand links between disease severity and health-related outcomes. The aim of this study is to explore the relationship between disease severity and the quality of life (QoL) of people with dementia and their family carers using a number of disease-specific and generic measures. METHODS: In the MODEM cohort study, three-hundred and seven people with clinically diagnosed dementia and their carers were recruited on a quota basis to provide equal numbers of people with mild (standardised Mini-Mental State Examination (sMMSE), n = 110), moderate (sMMSE 10-19, n = 100), and severe (sMMSE 0-9, n = 97) cognitive impairment. A series of multiple regression models were created to understand the associations between dementia severity and the QoL of people with dementia and the QoL of their carers. QoL was measured using self- (DEMQOL, EQ-5D, CASP-19) and proxy-reports (DEMQOL-Proxy, EQ-5D) of disease-specific and generic QoL of the person with dementia. Carer generic QoL was measured by self-report (EQ-5D, SF-12). RESULTS: Disease severity, as measured by the sMMSE, was not significantly associated with the QoL of the person with dementia or the carer (p > 0.05), even after controlling for potential confounding variables for self-reported instruments. Proxy measures (rated by the carer) differed systematically in that there were small, but statistically significant proportions of the variance of QoL was explained by severity of cognitive impairment in multiple adjusted models. We also found little in the way of statistically significant relationships between the QoL of people with dementia and that of their carers except between DEMQOL-Proxy scores and the carer EQ-5D scores and carer SF-12 mental sub-scores. CONCLUSIONS: The data generated supports the somewhat counterintuitive argument that severity of cognitive impairment (and therefore severity of dementia) is not associated with lower QoL for the person with dementia when self-report measures are used. However, in absolute terms, as judged by the variance in the multivariate models, it is clear that the contribution of dementia severity to the QoL of people with dementia is minimal whatever the measurement used, be it self- or proxy-rated, or disease-specific or generic.

Adolescents' experiences and perceptions of dementia.

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.