Differences in trajectories of quality of life according to type of dementia: 6-year longitudinal findings from the IDEAL programme.

BACKGROUND: People with different types of dementia may have distinct symptoms and experiences that affect their quality of life. This study investigated whether quality of life varied across types of dementia and over time. METHODS: The participants were 1555 people with mild-to-moderate dementia and 1327 carers from the IDEAL longitudinal cohort study, recruited from clinical services. As many as possible were followed for up to 6 years. Diagnoses included were Alzheimer's disease, vascular dementia, mixed Alzheimer's and vascular dementia, Parkinson's disease dementia, dementia with Lewy bodies, and frontotemporal dementia. Self- and informant-rated versions of the Quality of Life in Alzheimer's Disease scale were used. A joint model, incorporating a mixed effects model with random effects and a survival model to account for dropout, was used to examine whether quality of life varied by dementia type at the time of diagnosis and how trajectories changed over time. RESULTS: The strongest associations between dementia type and quality of life were seen around the time of diagnosis. For both self-ratings and informant ratings, people with Parkinson's disease dementia or dementia with Lewy bodies had lower quality of life scores. Over time there was little change in self-rated scores across all dementia types (- 0.15 points per year). Informant-rated scores declined over time (- 1.63 points per year), with the greatest decline seen in ratings by informants for people with dementia with Lewy bodies (- 2.18 points per year). CONCLUSIONS: Self-rated quality of life scores were relatively stable over time whilst informant ratings showed a steeper decline. People with Parkinson's disease dementia or dementia with Lewy bodies report particularly low levels of quality of life, indicating the importance of greater attention to the needs of these groups.

Comorbid health conditions and their impact on social isolation, loneliness, quality of life, and well-being in people with dementia: longitudinal findings from the IDEAL programme.

BACKGROUND: Most people with dementia have multiple health conditions. This study explores (1) number and type of health condition(s) in people with dementia overall and in relation to age, sex, dementia type, and cognition; (2) change in number of health conditions over two years; and (3) whether over time the number of health conditions at baseline is related to social isolation, loneliness, quality of life, and/or well-being. METHODS: Longitudinal data from the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort were used. Participants comprised people with dementia (n = 1490) living in the community (at baseline) in Great Britain. Health conditions using the Charlson Comorbidity Index, cognition, social isolation, loneliness, quality of life, and well-being were assessed over two years. Mixed effects modelling was used. RESULTS: On average participants had 1.8 health conditions at baseline, excluding dementia; increasing to 2.5 conditions over two years. Those with vascular dementia or mixed (Alzheimer's and vascular) dementia had more health conditions than those with Alzheimer's disease. People aged ≥ 80 had more health conditions than those aged < 65 years. At baseline having more health conditions was associated with increased loneliness, poorer quality of life, and poorer well-being, but was either minimally or not associated with cognition, sex, and social isolation. Number of health conditions had either minimal or no influence on these variables over time. CONCLUSIONS: People with dementia in IDEAL generally had multiple health conditions and those with more health conditions were lonelier, had poorer quality of life, and poorer well-being.

Health conditions in spousal caregivers of people with dementia and their relationships with stress, caregiving experiences, and social networks: longitudinal findings from the IDEAL programme.

OBJECTIVES: Longitudinal evidence documenting health conditions in spousal caregivers of people with dementia and whether these influence caregivers' outcomes is scarce. This study explores type and number of health conditions over two years in caregivers of people with dementia and subgroups based on age, sex, education, hours of care, informant-rated functional ability, neuropsychiatric symptoms, cognition of the person with dementia, and length of diagnosis in the person with dementia. It also explores whether over time the number of health conditions is associated with caregivers' stress, positive experiences of caregiving, and social networks METHODS: Longitudinal data from the IDEAL (Improving the experience of Dementia and Enhancing Active Life) cohort were used. Participants comprised spousal caregivers (n = 977) of people with dementia. Self-reported health conditions using the Charlson Comorbidity Index, stress, positive experiences of caregiving, and social network were assessed over two years. Mixed effect models were used RESULTS: On average participants had 1.5 health conditions at baseline; increasing to 2.1 conditions over two years. More health conditions were reported by caregivers who were older, had no formal education, provided 10 + hours of care per day, and/or cared for a person with more neuropsychiatric symptoms at baseline. More baseline health conditions were associated with greater stress at baseline but not with stress over time. Over two years, when caregivers' health conditions increased, their stress increased whereas their social network diminished DISCUSSION: Findings highlight that most caregivers have their own health problems which require management to avoid increased stress and shrinking of social networks.

Trajectories of cognitive and perceived functional decline in people with dementia: Findings from the IDEAL programme.

INTRODUCTION: Impaired cognition and instrumental activities of daily living (iADL) are key diagnostic features of dementia; however, few studies have compared trajectories of cognition and iADL. METHODS: Participants from the IDEAL study comprised 1537, 1183, and 851 people with dementia, and 1277, 977, and 749 caregivers at baseline, 12 and 24 months, respectively. Addenbrooke's Cognitive Examination-III and Functional Activities Questionnaire were used to measure cognition and iADL, respectively. Scores were converted to deciles. RESULTS: Self-rated iADL declined on average by -0.08 (-0.25, 0.08) decile points per timepoint more than cognition. Informant-rated iADL declined on average by -0.31 (-0.43, -0.18) decile points per timepoint more than cognition. DISCUSSION: Cognition and self-rated iADL declined at a similar rate. Informant-rated iADL declined at a significantly greater rate than cognition. Therefore, either cognition and perceived iADL decline at different rates or informants overestimate increasing iADL difficulties compared to both cognition and self-ratings. HIGHLIGHTS: Self-ratings of the degree of functional difficulties were consistent with cognition Decline in self-rated everyday activities was consistent with cognitive decline Informant-ratings of everyday activities declined more than cognition.

The Impact of Transcranial Magnetic Stimulation on Reading Processes: A Systematic Review.

The current systematic review examines the behavioral effects of TMS on reading. Transcranial magnetic stimulation (TMS) to targeted nodes of the brain's reading network has been shown to impact reading. Extracted data included (a) study characteristics, (b) methodology, (c) targeted nodes, (d) control paradigm, (e) type of reading task, (f) adverse effects, and (g) main findings. Data was classified by type of reading task: 1) phonological processing, 2) semantic judgment, 3) lexical decision, 4) whole word reading, and 5) visual or text characteristics. Seventy records from 46 studies (n = 844) were identified. Results indicate that TMS modulates semantic judgments when focused in the anterior aspects of the reading circuit, phonological processes after stimulation within the dorsal circuit, and impacts single word recognition and contextual reading when administered to the ventral circuit. Findings suggest that changes in specific behavioral aspects of reading following TMS may contribute to identification of foci for use as part of reading interventions.

Modelling the impact of functionality, cognition, and mood state on awareness in people with Alzheimer's disease.

OBJECTIVES: To investigate the nature of the relationship between cognitive function, mood state, and functionality in predicting awareness in a non-clinically depressed sample of participants with mild to moderate Alzheimer's disease (AD) in Brazil. METHODS: People with AD (PwAD) aged 60 years or older were recruited from an outpatient unit at the Center of AD of the Federal University of Rio de Janeiro, Brazil. Measures of awareness of condition (Assessment Scale of the Psychosocial Impact of the Diagnosis of Dementia), cognitive function (Mini-Mental State Examination), mood state (Cornell Scale for Depression in Dementia), and functionality (Pfeffer Functional Activities Questionnaire) were applied to 264 people with mild to moderate AD and their caregivers. Hypotheses were tested statistically using SEM approach. Three competing models were compared. RESULTS: The first model, in which the influence of mood state and cognitive function on awareness was mediated by functionality, showed a very good fit to the data and a medium effect size. The competing models, in which the mediating variables were mood state and cognitive function, respectively, only showed poor model fit. CONCLUSION: Our model supports the notion that the relationship between different factors and awareness in AD is mediated by functionality and not by depressive mood state or cognitive level. The proposed direct and indirect effects on awareness are discussed, as well as the missing direct influence of mood state on awareness. The understanding of awareness in dementia is crucial and our model gives one possible explanation of its underlying structure in AD.

The associations between personality traits and quality of life, satisfaction with life, and well-being over time in people with dementia and their caregivers: findings from the IDEAL programme.

BACKGROUND: Cross-sectional evidence indicates that certain personality traits may influence how well people with dementia and their caregivers are able to live alongside the condition. However, no studies to date have explored these associations longitudinally. The present study aimed to explore whether each of the Five-Factor personality traits were associated with change over two years in perceptions of 'living well' for people with dementia and their caregivers. 'Living well' was conceptualized as a composite of quality of life, satisfaction with life, and subjective well-being. METHODS: Data were analyzed from 1487 people with dementia and 1234 caregivers who took part in the IDEAL cohort. Participants were categorized into low, medium, and high groups for each trait using stanine scores. Latent growth curve models investigated associations between these groups and 'living well' scores for each trait at baseline and at 12 and 24 months. Covariates included cognition in people with dementia and stress in caregivers. A Reliable Change Index was calculated against which to evaluate changes in 'living well' scores over time. RESULTS: At baseline, neuroticism was negatively associated with 'living well' scores for people with dementia, while conscientiousness, extraversion, openness, and agreeableness were positively associated. For caregivers, neuroticism was negatively associated with 'living well' scores at baseline while conscientiousness and extraversion were positively associated. 'Living well' scores were mostly stable over time with no influence of personality traits on observed changes. CONCLUSIONS: Findings suggest that personality traits, particularly neuroticism, have a meaningful impact on how people with dementia and caregivers rate their capability to 'live well' at baseline. Over time 'living well' scores for each personality trait group were largely stable. Studies utilizing longer follow-up periods and more appropriate measures of personality are needed to corroborate and extend the findings of the present study.

Resilience in caregivers of people with mild-to-moderate dementia: findings from the IDEAL cohort.

OBJECTIVES: A novel model of resilience was tested in caregivers of people with mild-to-moderate dementia and was extended to explore whether including self-efficacy, optimism, and self-esteem improved its predictive value. DESIGN: Cross-sectional. SETTING: Data from the IDEAL cohort were used. PARTICIPANTS: The study comprised 1222 caregivers of people with dementia. MEASUREMENTS: A composite resilience score was calculated from five measures. Multivariable regressions were used to investigate factors associated with resilience. RESULTS: Greater resilience was associated with being older, being male, and caregiving for older people with dementia. Greater resilience was also observed when people with dementia had fewer functional difficulties and/or fewer neuropsychiatric symptoms, there was a stronger dyadic relationship, and the caregiver had fewer social restrictions, less neuroticism, and greater perceived competence. Surprisingly, caregiver self-efficacy, optimism, and self-esteem were unrelated to resilience. CONCLUSION: Caregivers of people with mild-to-moderate dementia generally scored well for resilience. Resilience was associated with both the personal characteristics of caregivers and level of care need among people with dementia. Future work is needed to determine whether the caregivers in this cohort appeared resilient because the care recipients had relatively low care needs and consequently placed fewer demands on caregiver well-being than would be the case where dementia is more advanced.

Prediction of dementia using diffusion tensor MRI measures: the OPTIMAL collaboration.

OBJECTIVES: It has been suggested that diffusion tensor imaging (DTI) measures sensitive to white matter (WM) damage may predict future dementia risk not only in cerebral small vessel disease (SVD), but also in mild cognitive impairment. To determine whether DTI measures were associated with cognition cross-sectionally and predicted future dementia risk across the full range of SVD severity, we established the International OPtimising mulTImodal MRI markers for use as surrogate markers in trials of Vascular Cognitive Impairment due to cerebrAl small vesseL disease collaboration which included six cohorts. METHODS: Among the six cohorts, prospective data with dementia incidences were available for three cohorts. The associations between six different DTI measures and cognition or dementia conversion were tested. The additional contribution to prediction of other MRI markers of SVD was also determined. RESULTS: The DTI measure mean diffusivity (MD) median correlated with cognition in all cohorts, demonstrating the contribution of WM damage to cognition. Adding MD median significantly improved the model fit compared to the clinical risk model alone and further increased in all single-centre SVD cohorts when adding conventional MRI measures. Baseline MD median predicted dementia conversion. In a study with severe SVD (SCANS) change in MD median also predicted dementia conversion. The area under the curve was best when employing a multimodal MRI model using both DTI measures and other MRI measures. CONCLUSIONS: Our results support a central role for WM alterations in dementia pathogenesis in all cohorts. DTI measures such as MD median may be a useful clinical risk predictor. The contribution of other MRI markers varied according to disease severity.

Predictors of Awareness of Functional Ability in People with Dementia: The Contribution of Personality, Cognition, and Neuropsychiatric Symptoms - Findings from the IDEAL Program.

INTRODUCTION: Discrepancy scores reflecting the difference between parallel ratings made by people living with dementia (PwD) in the mild-to-moderate stages and by their informants provide a way to investigate awareness of functional ability in relation to activities of daily living (ADL). METHODS: Two measures of ADL (Functional Activities Questionnaire; Dependence Scale) were completed by 1,227 PwD and their informants in the IDEAL cohort study baseline assessment. Self-rated and informant-rated scores were used to calculate discrepancies, which were used as an indicator of awareness of functional ability. Smaller discrepancy scores were considered to reflect greater awareness on the part of PwD. PwD completed questionnaires on depression, personality, comorbidities, neuropsychiatric symptoms, and completed a measure of cognition. Informants provided ratings of stress. Univariable and multiple regressions were used to investigate factors related to ADL discrepancy. RESULTS: A similar pattern of associations were found for both ADL discrepancy scores. Smaller discrepancy scores were associated with higher levels of depression, higher neuroticism, fewer neuropsychiatric symptoms, higher comorbidity, lower carer stress, and receipt of less than 1 hour of care per day from the informant. DISCUSSION/CONCLUSION: There was a clear pattern of factors that were associated with greater awareness for both measures of functional ability. These factors associated with smaller discrepancy scores could be used to identify PwD who might benefit from targeted interventions to support their independence.

How you read affects what you gain: Individual differences in the functional organization of the reading system predict intervention gains in children with reading disabilities.

There is now considerable evidence regarding the types of interventions that are effective at remediating reading disabilities on average. It is generally unclear, however, what predicts the magnitude of individual-level change following a given intervention. We examine new predictors of intervention gains that are theoretically grounded in computational models of reading and focus on individual differences in the functional organization of the reading system. Specifically, we estimate the extent to which children with reading disabilities (n=118 3rd-4th graders) rely on two sources of information during an oral word reading task - print-speech correspondences and semantic imageability - before and after a phonologically-weighted intervention. We show that children who relied more on print-speech regularities and less on imageability pre-intervention had better intervention gains. In parallel, children who over the course of the intervention exhibited greater increases in their reliance on print-speech correspondences and greater decreases in their reliance on imageability had better intervention outcomes. Importantly, these two factors were differentially related to specific reading task outcomes, with greater reliance on print-speech correspondences associated with pseudoword naming, while (lesser) reliance on imageability related to word reading and comprehension. We discuss the implications of these findings for theoretical models of reading acquisition and educational practice.

PRESERVE: Randomized Trial of Intensive Versus Standard Blood Pressure Control in Small Vessel Disease.

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Measuring Awareness in People With Dementia: Results of a Systematic Scoping Review.

BACKGROUND: Awareness of the diagnosis or related changes in functioning varies in people with dementia (PwD), with implications for the well-being of PwD and their carers. Measuring awareness in a clinical setting could facilitate tailored support and optimize involvement in personal health and care decisions. This scoping review aimed to identify validated methods of assessing awareness in dementia and appraise their clinical utility. METHOD: A systematic search was conducted of English-language publications that measured awareness in PwD, in 6 electronic databases. Search terms included dement*, Alzheimer*, Pick disease, and awareness, unawareness, anosognosia, insight, denial, metacognit*, or discrepanc*. RESULTS: We screened 30,634 articles, finding 345 articles that met our inclusion criteria. We identified 76 measures, most commonly using a discrepancy questionnaire comparing evaluations of function by PwD and an informant. There were 30 awareness measures developed and validated for use in dementia populations but few designed for general clinical use. CONCLUSIONS: Although we found a range of clinical indications for measuring awareness, there were few studies investigating clinical applications and few tools designed for clinical purposes. Further investigation and development of a person-centered tool could facilitate health and care choices in mild-to-moderate dementia.

Is that a pibu or a pibo? Children with reading and language deficits show difficulties in learning and overnight consolidation of phonologically similar pseudowords.

Word learning is critical for the development of reading and language comprehension skills. Although previous studies have indicated that word learning is compromised in children with reading disability (RD) or developmental language disorder (DLD), it is less clear how word learning difficulties manifest in children with comorbid RD and DLD. Furthermore, it is unclear whether word learning deficits in RD or DLD include difficulties with offline consolidation of newly learned words. In the current study, we employed an artificial lexicon learning paradigm with an overnight design to investigate how typically developing (TD) children (N = 25), children with only RD (N = 93), and children with both RD and DLD (N = 34) learned and remembered a set of phonologically similar pseudowords. Results showed that compared to TD children, children with RD exhibited: (i) slower growth in discrimination accuracy for cohort item pairs sharing an onset (e.g. pibu-pibo), but not for rhyming item pairs (e.g. pibu-dibu); and (ii) lower discrimination accuracy for both cohort and rhyme item pairs on Day 2, even when accounting for differences in Day 1 learning. Moreover, children with comorbid RD and DLD showed learning and retention deficits that extended to unrelated item pairs that were phonologically dissimilar (e.g. pibu-tupa), suggestive of broader impairments compared to children with only RD. These findings provide insights into the specific learning deficits underlying RD and DLD and motivate future research concerning how children use phonological similarity to guide the organization of new word knowledge.

The impact of auditory hallucinations on "living well" with dementia: Findings from the IDEAL programme.

OBJECTIVE: To determine whether auditory hallucinations in community-dwelling people with dementia (PwD) living in the community impacted on quality of life (QoL), subjective wellbeing and life satisfaction. DESIGN: Cross-sectional cohort study. SETTINGS AND PARTICIPANTS: 1251 community-dwelling PwD and caregivers were included in this study. MEASURES: Neuropsychiatric Inventory Questionnaire completed by caregiver interview. Mean differences between the absence and presence of auditory hallucinations were compared to scores on three validated measures of living well: QoL in Alzheimer's disease scale (QoL-AD), World Health Organization-Five Well-being Index and Satisfaction with Life Scale. Analysis of covariance determined the confounding contributions of cognition via Mini-Mental State Examination, depression via Geriatric Depression Scale-10, caregiver stress via Relative Stress Scale and whether antipsychotic drugs were prescribed. RESULTS: Auditory hallucinations were associated with lower scores for QoL (p < 0.001, η2  = 0.01), wellbeing (p < 0.001, η2  = 0.02) and life satisfaction (p < 0.001, η2  = 0.01). After controlling for background measures, which were potential confounds, the relationship between auditory hallucinations and QoL (p = 0.04, pη2  = 0.01) and wellbeing (p < 0.000, pη2  = 0.02) remained significant but there was no significant association with life satisfaction. CONCLUSION: Auditory hallucinations are associated with lower QoL and wellbeing in PwD living in the community. This has implications for targeted therapies in PwD with psychotic symptoms.

Does awareness of condition help people with mild-to-moderate dementia to live well? Findings from the IDEAL programme.

BACKGROUND: People living with dementia vary in awareness of their abilities. We explored awareness of the condition and diagnosis in people with mild-to-moderate dementia, and how this relates to quality of life, well-being, life satisfaction, and caregiver stress. METHODS: This study was a cross-sectional exploratory analysis of data from the IDEAL cohort, which recruited people with dementia living at home and available caregivers from 29 research sites in Great Britain. Our study included 917 people with mild-to-moderate dementia and 755 carers. Low and high awareness groups were derived from self-reported responses to a dementia representation measure. Logistic regression was used to explore predictors of awareness of condition and diagnosis using demographic, cognitive, functional and psychological measures, and the relationship with quality of life, well-being and life satisfaction ('living well'), and caregiver stress. RESULTS: There were 83 people with low awareness of their condition. The remaining 834 people showed some awareness and 103 of these had high awareness of their condition and diagnosis. Psychosocial factors were stronger predictors of awareness than cognitive and functional ability. Those with higher awareness reported lower mood, and lower scores on indices of living well as well as lower optimism, self-efficacy and self-esteem. Low awareness was more likely in those aged 80y and above, and living in more socially deprived areas. No relationship was seen between caregiver stress and awareness. CONCLUSIONS: Awareness of the condition and diagnosis varies in people with mild-to-moderate dementia and is relevant to the capability to live well. Awareness should be considered in person-centered clinical care.

Awareness of deficit following traumatic brain injury: A systematic review of current methods of assessment.

Background: Awareness of deficit plays an important role in adjustment following a brain injury and has been noted to impact on engagement with and outcome of rehabilitation. However, there are challenges associated with the assessment of awareness. Aim: To systematically review all instruments used to assess intellectual awareness of deficits following Traumatic Brain Injury (TBI) in adults, and evaluate instrument characteristics (e.g., the format and focus of measures of awareness) and assessment methods adopted. Results: Thirty-four studies, all rated as fair to good quality, were identified and within these twenty-three different assessment tools were adopted. The most common method of assessment was patient-proxy discrepancy, with three frequently used instruments employed in a total of 22 of the 34 studies. Across studies, variability was noted regarding the type of assessment method dependent on various sample demographics (e.g., age of sample) and injury characteristics (e.g., time post injury). Conclusions: There is no consensus on the preferred instrument to assess intellectual awareness of deficits after TBI. Continued instrument development should attempt to incorporate multiple perspectives and assessment should take into account demographic and injury-related factors. An insightful avenue for future research would be to determine which factors are likely to impact awareness measurement.

Apathy, but not depression, predicts all-cause dementia in cerebral small vessel disease.

OBJECTIVE: To determine whether apathy or depression predicts all-cause dementia in small vessel disease (SVD) patients. METHODS: Analyses used two prospective cohort studies of SVD: St. George's Cognition and Neuroimaging in Stroke (SCANS; n=121) and Radboud University Nijmegen Diffusion Tensor and Magnetic Resonance Cohort (RUN DMC; n=352). Multivariate Cox regressions were used to predict dementia using baseline apathy and depression scores in both datasets. Change in apathy and depression was used to predict dementia in a subset of 104 participants with longitudinal data from SCANS. All models were controlled for age, education and cognitive function. RESULTS: Baseline apathy scores predicted dementia in SCANS (HR 1.49, 95% CI 1.05 to 2.11, p=0.024) and RUN DMC (HR 1.05, 95% CI 1.01 to 1.09, p=0.007). Increasing apathy was associated with dementia in SCANS (HR 1.53, 95% CI 1.08 to 2.17, p=0.017). In contrast, baseline depression and change in depression did not predict dementia in either dataset. Including apathy in predictive models of dementia improved model fit. CONCLUSIONS: Apathy, but not depression, may be a prodromal symptom of dementia in SVD, and may be useful in identifying at-risk individuals.

Factors associated with self- and informant ratings of quality of life, well-being and life satisfaction in people with mild-to-moderate dementia: results from the Improving the experience of Dementia and Enhancing Active Life programme.

BACKGROUND: a large number of studies have explored factors related to self- and informant ratings of quality of life in people with dementia, but many studies have had relatively small sample sizes and mainly focused on health conditions and dementia symptoms. The aim of this study is to compare self- and informant-rated quality of life, life satisfaction and well-being, and investigate the relationships of the two different rating methods with various social, psychological and health factors, using a large cohort study of community-dwelling people with dementia and carers in Great Britain. METHODS: this study included 1,283 dyads of people with mild-to-moderate dementia and their primary carers in the Improving the experience of Dementia and Enhancing Active Life study. Multivariate modelling was used to investigate associations of self- and informant-rated quality of life, life satisfaction and well-being with factors in five domains: psychological characteristics and health; social location; capitals, assets and resources; physical fitness and health; and managing everyday life with dementia. RESULTS: people with dementia rated their quality of life, life satisfaction and well-being more highly than did the informants. Despite these differences, the two approaches had similar relationships with social, psychological and physical health factors in the five domains. CONCLUSION: although self- and informant ratings differ, they display similar results when focusing on factors associated with quality of life, life satisfaction and well-being. Either self- or informant ratings may offer a reasonable source of information about people with dementia in terms of understanding associated factors.

Caregiver influences on 'living well' for people with dementia: Findings from the IDEAL study.

Objectives: The capability to 'live well' in people with dementia can be influenced by many factors, including those related to the experiences of their informal caregiver. How caregivers experience their own role can affect not only their well-being but also the way they provide care and hence the experience of the person with dementia. The aim of this study is to identify the potential impact of the caregiver's perception of the caregiving experience on how people with mild to moderate dementia self-rate their QoL, well-being and satisfaction with life.Method: This study utilised time-point 1 data from 1283 informal caregiver and the 1283 people with dementia whom they provide care from the IDEAL cohort study. Multivariate modelling was used to investigate the associations between measures related to the caregiver's perception of the caregiving experience (caregiving stress, perceived social restrictions, caregiving competence, positive aspects of caregiving, and coping) and the self-ratings of QoL, satisfaction with life, and well-being by the person with dementia.Results: Lower QoL ratings by the person with dementia were associated with high caregiver stress (-1.98; 95% CI: -2.89, -1.07), high perceived social restrictions (-2.04; 95% CI: -2.94, -1.14) and low caregiving competence (-2.01; 95% CI: -2.95, -1.06). Similar associations were found for satisfaction with life and wellbeing. Positive aspects of caregiving and coping were not associated with outcomes for the person with dementia.Conclusion: The findings indicate that how the caregiver experiences caregiving can affect the person with dementia. This finding reinforces the importance of providing support to caregivers.