Awareness for People With Alzheimer’s Disease: Profiles and Weekly Trajectories

Mayelle, Amandine; Hazebrouck, Capucine; Haj, Mohamad El; Mograbi, Daniel C.; Antoine, Pascal

doi:10.3389/fnagi.2021.781426

Cited by 5 publications

(7 citation statements)

References 39 publications

(53 reference statements)

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“…Consistent with our findings, caregiver stress has been associated with lower awareness in the person with dementia when assessed with discrepancy measures reliant on caregiver ratings ( Martyr et al, 2012 ; Clare et al, 2012a ; Mayelle et al, 2022 ), or with a clinician rating of global awareness ( Turró-Garriga et al, 2013 ). It seems likely that caring for someone who shows little acknowledgement of their difficulties is inherently stressful.…”

Section: Discussionsupporting

confidence: 89%

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

Alexander,

Martyr,

Gamble

et al. 2023

Front. Aging Neurosci.

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IntroductionThe 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.MethodsWe 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.ResultsFor 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.ConclusionFew 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.

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Section: Discussionsupporting

confidence: 89%

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

Alexander,

Martyr,

Gamble

et al. 2023

Front. Aging Neurosci.

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“…In a qualitative and quantitative study with mild and moderate AD persons, Trindade et al found that awareness of condition was more preserved than awareness of specific functional deficits [ 10 ]. Mayelle et al using the Awareness of Self and Disease Assessment scale found that awareness in AD is heterogeneous and can fluctuate over time with three different patterns (deficit, stability, or improvement) [ 11 ]. However, little is known about the impact of having awareness of diagnosis, especially at earlier stages of the disease.…”

Section: Discussionmentioning

confidence: 99%

“…Second, although the RADIX is a useful and validated tool to understand dementia representations, the use of open questions and the listing of options for possible causes in this questionnaire can be challenging for respondents and the reliability of their subjective assessments [ 12 , 13 ]. Third, given the cross-sectional design of the study, we have no information about participants’ potential changes in their levels of awareness over time [ 9 , 11 ]. Finally, this study did not collect whether the participants had received any information on the disease and its long-term prognosis.…”

Section: Discussionmentioning

confidence: 99%

Awareness of Diagnosis in Persons with Early-Stage Alzheimer’s Disease: An Observational Study in Spain

et al. 2022

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Introduction Limited information is available on people’s experiences of living with Alzheimer’s disease (AD) at earlier stages. This study assessed awareness of diagnosis among people with early-stage AD and its impact on different person-centered outcome measures. Methods We conducted an observational, cross-sectional study in 21 memory clinics in Spain. Persons aged 50–90 years, diagnosed with prodromal or mild AD (NIA/AA criteria), a Mini Mental State Examination (MMSE) score ≥ 22, and a Clinical Dementia Rating-Global score (CDR-GS) of 0.5 or 1.0 were recruited. The Representations and Adjustment to Dementia Index (RADIX) was used to assess participants’ beliefs about their condition and its consequences. Results A total of 149 persons with early-stage AD were studied. Mean (SD) age was 72.3 (7.0) years and 50.3% were female. Mean duration of AD was 1.4 (1.8) years. Mean MMSE score was 24.6 (2.1) and 87.2% had a CDR-GS score of 0.5. Most participants ( n = 84, 57.5%) used a descriptive term related to specific AD symptoms (e.g., memory difficulties) when asked what they called their condition. Participants aware of their diagnosis using the term AD ( n = 66, 45.2%) were younger, had more depressive symptoms, and poorer life satisfaction and quality of life compared to those without awareness of their specific diagnosis. Practical and emotional consequences RADIX scores showed a significant negative correlation with Quality of Life in Alzheimer’s Disease score (rho = − 0.389 and − 0.413, respectively; p < 0.0001). Years of education was the only predictor of awareness of AD diagnosis [OR = 1.04 (95% CI 1.00–1.08); p = 0.029]. Conclusions Awareness of diagnosis was a common phenomenon in persons with early-stage AD negatively impacting their quality of life. Understanding illness representations in earlier stages may facilitate implementing optimized care that supports improved quality of life and well-being.

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“…Ces deux premiers niveaux d'hétérogénéité sont également supposés influer sur l'hétérogénéité clinique de cette symptomatologie [7][8]. Cette dernière concerne aussi bien les dimensions de l'anosognosie, soit les différents domaines affectés (cognitifs, comportementaux…) [5,[7][8][9][10], que sa fréquence [1,[11][12] et sa sévérité en fonction du stade de la MA considéré [6][7][8].…”

Section: Introductionunclassified

Updates on anosognosia in Alzheimer’s disease

Jacus¹,

Voltzenloge²,

Farrié³

et al. 2023

Gériatrie Et Psychologie Neuropsychiatrie Du Vieillissement

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Conflits d'intérêts : Les auteurs déclarent n'avoir aucun lien d'intérêts en rapport avec l'article. Nombres de caractères, espaces et notes de bas de page compris (à l'exclusion de la présente page de titre) : 47 364  Nombre de références : 80 yet, in particular concerning the clinician rating, leading to contrasted results. Most of recent studies reported positive correlations with apathy and AD severity, and negative relationships with depressive symptoms. Therefore, impaired awareness seems to be mainly influenced by patient's depression and apathy. We discuss these correlates and shared aspects of apathy and impaired awareness from neuroanatomical, clinical and conceptual viewpoints. We also highlight the relevance and limits of quantitative and qualitative assessment methods, in particular phenomenological.

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Awareness for People With Alzheimer’s Disease: Profiles and Weekly Trajectories

Cited by 5 publications

References 39 publications

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

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

Awareness of Diagnosis in Persons with Early-Stage Alzheimer’s Disease: An Observational Study in Spain

Updates on anosognosia in Alzheimer’s disease

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