Awareness of memory functioning and quality of life for people with dementia and their caregivers

Abstract

Background: Unawareness of memory functioning is a key symptom of Alzheimer’s disease and dementia that has been demonstrated to be related to a number of important factors for the person with dementia (PwD) and their family caregivers including quality of life and depression. Understanding more about how awareness relates to these factors will help inform how PwD and their caregivers are best supported. Objective: A meta-analysis was conducted in order to examine the relationship between Awareness and depression in dementia. An empirical study was conducted to examine the contribution awareness provides to explaining PWDs’ Quality of Life (QoL). PwD have been found to be aware of factors that affect their caregiver and so caregiver wellbeing and quality of life and the quality of the caregiving relationship were also investigated as well as more established predictors of quality of life for PwD. Both PwD self-ratings and caregiver ratings of the PwD they care for of QoL were examined as they have been shown to be affected by different factors. Method: Meta-analysis: A search of electronic databases Psycinfo, Embase and Medline was conducted. A meta-analysis of correlations was undertaken examining the relationship between awareness and depression in dementia. Empirical study: 27 PwD and their caregivers were recruited. In order to assess the research aims the PwD completed measures of: Quality of life (Quality Of Life-Alzheimer’s Disease scale), awareness of memory functioning (Memory Awareness Rating Scale-Adjusted), cognitive functioning (Addenbrooke’s Cognitive Exam-R), depression and anxiety (Hospital Anxiety and Depression Scale). The caregiver completed measures of: PwD Quality of life (Quality Of Life-Alzheimer’s Disease scale proxy), Memory Functioning Scale (from MARSA), self-ratings of depression and anxiety (Hospital Anxiety and Depression Scale), activities of daily living (Disability Assessment in Dementia), Neuropsychiatric symptoms (Neuropsychiatric symptoms inventory-Questionnaire), caregiver burden (Zarit Burden Inventory), and rating of relationship quality with PwD (Burns Relationship Satisfaction Scale). Results: Meta-analysis: Thirty-one studies were identified. A small association was found between awareness and depression with substantial amount of heterogeneity (- 0.23). Analysing the studies that excluded major depression demonstrated that mild depression had a moderate negative relationship with awareness (-0.42). Subgroup analysis showed that the different measures of awareness used seemed to suggest different effects with depression for different measures. Empirical study: Awareness was not found to predict PwD rated or caregiver rated QoL. No caregiver variables predicted PwD QoL. Depression and neuropsychiatric symptoms predicted PwD QoL. Caregiver rated QoL was predicted by activities of daily living and caregiver rated quality of caregiving relationship. Conclusions: Meta-analysis: The effect between mild depression and lack of awareness but not major depression supports the assertion that unawareness is a psychological response to decline in memory functioning in dementia. Neither depression nor awareness appear to be unitary constructs in PwD. Empirical study: Awareness not related to PwD QoL. The quality of caregiving relationship is important to QoL in a dementia context. PwD and their caregivers rate the QoL of PwD differently.