Generic quality of life assessment in dementia patients: a prospective cohort study

Abstract

BackgroundQuality of life (QoL) is increasingly used to characterize the impact of disease and the efficacy of interventions.MethodsProspective cohort study in patients' and proxies' homes with137 patients with dementia (age 52 to 88; Mini-Mental Status Examination (MMSE) 3 to 28) and their proxies (age 43 to 90). MMSE, Behave-AD, Geriatric Depression Scale (GDS), and Bayer-ADL scale (B-ADL), and the Euroqol (EQ-5D; patient self-rating, proxy self-rating, and proxy-rating of patient).ResultsB-ADL impairment and Behave-AD total score increased with dementia severity (Kruskal-Wallis p < 0.001 and p = 0.023, respectively). Patients' self-rated QoL and proxies' self-rated QoL were unrelated to dementia severity (p = 0.148 and p = 0.414, respectively). The difference between patients' self- and proxies'-rating of the patient's QoL correlated with the patient's MMSE (Spearman's rho = -0.434; p < 0.001), even if analysis was constrained to patients with mild AD (rho = -0.328; p = 0.019). The proxies' rating of the patients QoL was not only correlated with cognitive and behavioral symptoms of the patient but also with mood (GDS-score; rho = 0.317; p < 0.001) and cognitive abilities (verbal fluency; rho = 0.209; p < 0.018) of the proxy.ConclusionProxies' assessment of the patients' QoL is related to the proxies' health, and the difference of patient's and proxie's QoL-rating is correlated with dementia severity even in mild dementia stages. QOL measures use ratings of the individual to assess the impact of symptoms and disorders on everyday life. In dementia patients, however, this impact is not captured since patients' and proxies' self-assessment of their own QoL do not reflect severity of disease whatsoever. Patients' and proxies' influencing variables render the score obtained with generic quality of life assessment meaningless in capturing the impact of dementia. Decisions on initiation or discontinuation of treatment or allocation of other resources for patients with dementia therefore need not depend on generic assessment of quality of life.

Factors Associated With the Variability in Caregiver Assessments of the Capacities of Patients With Alzheimer Disease

“…Generally speaking, previous studies have also reported an association between caregiver depression and more negative assessments of the patient's functional capacities, 1 neuropsychiatric symptoms, 6 and quality of life. [19][20][21][22][23][24][25][26] Caregiver gender had less of an influence than both burden and depression. In general, however, women, and especially daughters, gave more negative assessments of the patient's capacities.…”

“…14,15 The caregiver's evaluation may also be influenced by variables such as personality, general well-being, and the quality of relationship with the patient, and these factors may also produce a degree of bias in caregiver assessments. 16 When it comes to evaluating the patient's quality of life (QoL-p), both burden [17][18][19][20][21][22] and depression [19][20][21][22][23][24] in caregivers have been shown to produce a negative bias in their assessments. Likewise, burden and poor mental health in caregivers are inversely correlated with their perception of QoL-p 25,26 ; female caregivers give the most negative ratings of QoL-p, 17,27 and they also present with more depression and anxiety.…”

Severity of Dementia, Anosognosia, and Depression in Relation to the Quality of Life of Patients with Alzheimer Disease: Discrepancies Between Patients and Caregivers

“…The observed stability in patients' ratings of QoLp (39, 40) and the decreasing ratings among caregivers has been widely reported. (13,20) …”

“…(AD) This research has shown that in patients higher depression scores, (2-4) the presence of behavioral disorders (5-7) and greater functional deficits (8,9) all have negative effects on QoLp. Among caregivers, poorer ratings of QoLp have been shown to be associated with functional deficits (10,11) and behavioral disorders (3,9) in the patient and with burden (3) and depression (12,13) in the caregiver. Some authors have also reported that perceptions of QoLp are affected by sociodemographic and contextual factors such as the caregiver's gender (14), his or her relationship to the patient, (15)(16)(17)) the patient's place of residence (2,3) or the environmental conditions.…”

“…(18) Although the assessment of QoLp may be a valid and reliable indicator at any stage of the disease there are certain aspects which require careful consideration. One of the most important in this regard concerns the large discrepancy between patient and caregiver reports of quality of life, (3,19) this being particularly notable as the severity of dementia increases; (12)(13)(14)(15)(16)(17)(18)(19)(20) other factors to consider in this regard are the influence of depression (21) and reduced awareness of deficits (anosognosia) in the patient. (22)(23)(24)(25)(26) In light of the above the aims of the present study were as follows: 1) to determine the influence of severity of dementia, depression and anosognosia as regards the discrepancies between patient and caregiver reports of QoLp; and 2) to identify specific groups of patients associated with these discrepancies.…”