Healthcare Awareness Profile Interview: Development of a new evidence-based brief clinical tool to assess awareness in people with dementia.

People with dementia vary in awareness of difficulties. Evaluating awareness could facilitate personalized care. However, current research measures are unsuitable for practical clinical application. We aimed to develop a brief multidimensional awareness interview for clinical use. Informed by available evidence about awareness of dementia, items suitable for both in-person and remote administration were modified from validated measures or developed for clinical application. The interview was administered via telephone or videoconference to 31 community-dwelling people with mild-to-moderate dementia. An informant completed a corresponding questionnaire. A multidimensional profile of awareness was created using self-report of symptoms, and discrepancies between self-rating and either informant rating or objective memory task performance. Feedback from participants and informants and discussions with clinical advisory and patient and public involvement groups helped finalize the interview. Remote administration was straightforward taking on average under 11 min. Awareness profiles showed a spectrum of awareness across domains. Feedback indicated that the items were acceptable and understandable. Certain aspects could be mildly upsetting where current difficulties were highlighted. Subject to further validation, the Healthcare Awareness Profile Interview (HAPI) shows potential as an evidence-based brief clinical tool for assessing awareness in people with mild-to-moderate dementia.

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.

Changes in awareness of condition in people with mild-to-moderate dementia: Longitudinal findings from the IDEAL cohort.

OBJECTIVES: Awareness of difficulties shown by people with dementia is known to vary, but few studies have explored changes in awareness over time. Investigating this could further the understanding of surrounding concepts and reasons for impaired awareness. Recognising emerging or diminishing awareness could facilitate discussions about diagnosis and appropriate post-diagnostic support. METHODS: Using longitudinal data from the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort, awareness in community-dwelling people with mild-to-moderate dementia was assessed at three timepoints over 2 years. A validated checklist was used to evaluate awareness of difficulties associated with dementia. We examined changes in awareness for people with low awareness at baseline, and used case-matching to describe differences in characteristics between people who gained awareness, and those who continued with low awareness. RESULTS: At baseline, 83 people from a sample of 917 showed low awareness. The majority of those remaining in the study at later timepoints had gained awareness, some as late as four or more years after diagnosis. Case-matched comparisons revealed few distinguishing characteristics: cases with stable low awareness had similar or better cognitive and functional ability than those who gained and retained awareness at 12 and 24 months, but may have had more co-morbidities. CONCLUSIONS: Self-reported awareness of difficulties can change and may increase over time in people with mild-to-moderate dementia. There may be individual reasons for ongoing low awareness, not explained by cognitive or functional ability. This challenges the view that a single record of low awareness represents a fixed disease-related symptom, and highlights the complex, individual and dynamic nature of awareness.

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.

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.

Dyadic influences on awareness of condition in people with dementia: findings from the IDEAL cohort.

Introduction: The discrepancy between caregiver-ratings and self-ratings of abilities is commonly used to assess awareness in people with dementia. We investigated the contribution of caregiver and dyadic characteristics to the difference in perspective between caregiver-informants and people with dementia about difficulties experienced, when considering awareness of condition. Methods: We conducted exploratory cross-sectional analyses using data from the IDEAL cohort. Participants were 1,038 community-dwelling people with mild-to-moderate dementia, and coresident spouse/partner caregivers. The Representations and Adjustment to Dementia Index (RADIX) checklist reporting difficulties commonly experienced in dementia was completed by 960 caregiver-informants and 989 people with dementia. Difference in scores was calculated for 916 dyads. Demographic information, cognition, informant-rated functional ability and neuropsychiatric symptoms were recorded for the person with dementia. Self-reported data were collected on mood, comorbidity, religion, importance of religion, relationship quality, and caregiver stress. Results: For most dyads, caregivers reported more RADIX difficulties than people with dementia. Caregiver RADIX ratings were more closely associated with informant-rated functional ability and neuropsychiatric symptoms than with cognition. More RADIX difficulties and higher stress were reported by female caregivers. Greater RADIX difference was associated with more caregiver stress, and older age but less depression in people with dementia. Conclusion: Few dyadic characteristics were important, but caregiver stress was higher where caregivers reported more RADIX difficulties and/or the difference in perspective was greater, whereas partners with dementia reported better mood. In addition to offering information about awareness of condition, the caregiver rating and difference in perspectives could indicate where more support is needed.

Measuring awareness in people with dementia: protocol for a scoping review.

BACKGROUND: People with dementia (PwD) vary in the degree of awareness they show about their situation, both generally concerning the diagnosis and more specifically around certain aspects or objects of awareness such as awareness of memory impairment, altered daily activities or social functioning. The extent of awareness or lack of awareness has consequences for well-being of PwD and carers, impacting on rates of hospital admission, institutionalization, mood, adjustment to diagnosis, outcomes from intervention and carer burden. An accurate estimation of a person's awareness could therefore be useful in a clinical setting to support PwD and their carers in making appropriate choices for health and care decisions, and could facilitate safe management by health care professionals, e.g. in an acute care setting. There is a range of different approaches to measuring awareness reported in the dementia research literature, with varying estimates of the frequency of lack of awareness, reflecting different methodologies and populations. The majority of the methods have been developed for research purposes and may not be suitable for clinical use. There are no recent scoping or systematic reviews of the available methods. METHOD: We will conduct a scoping review of published studies that have assessed awareness in people with dementia of all types, and all degrees of severity. The systematic search will include the electronic databases PubMed, Embase, PsycInfo, CINAHL, Web of Science and Cochrane Library, using search terms for dementia ("dement*" or "Alzheimer*" or "Pick's disease") and "awareness", "unawareness", "anosognosia", "insight", "denial", "metacognit*" or "discrepanc*" identified from pilot searches. Findings will be mapped and described according to the method used, the setting and diagnosis and the object of awareness studied if specified. Validated measures will be identified. DISCUSSION: This scoping review will provide an overview of the methods used to measure awareness in people with dementia, allowing comparison of the methods along with identification of validated measures. The methods or components will be appraised for potential clinical use, and gaps in research will be highlighted.