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.

BackgroundMedically unexplained symptoms (MUS) and somatoform disorders are common in general practices, but there is evidence that general practitioners (GPs) rarely use these codes. Assuming that correct classification and coding of symptoms and diseases are important for adequate management and treatment, insights into these processes could reveal problematic areas and possible solutions. Our study aims at exploring general practitioners’ views on coding and reasons for not coding MUS/somatoform disorders.MethodsWe invited GPs to participate in six focus groups (N = 42). Patient vignettes and a semi-structured guideline were used by two moderators to facilitate the discussions. Recordings were transcribed verbatim. Two researchers analyzed the data using structuring content analysis with deductive and inductive category building.ResultsThree main categories turned out to be most relevant. For category a) “benefits of coding” GPs described that coding is seen as being done for reimbursement purposes and is not necessarily linked to the content of their reference files for a specific patient. Others reported to code specific diagnoses only if longer consultations to explore psychosomatic symptoms or psychotherapy are intended to be billed. Reasons for b) “restrained coding” were attempting to protect the patient from stigma through certain diagnoses and the preference for tentative diagnoses and functional coding. Some GPs admitted to c) “code inaccurately” attributing this to insufficient knowledge of ICD-10-criteria, time constraints or using “rules of thumb” for coding.ConclusionsThere seem to be challenges in the process of coding of MUS and somatoform disorders, but GPs appear not to contest the patients’ suffering and accept uncertainty (about diagnoses) as an elementary part of their work. From GPs’ points of view ICD-10-coding does not appear to be a necessary requirement for treating patients and coding might be avoided to protect the patients from stigma and other negative consequences. Our findings supply a possible explanation for the commonly seen difference between routine and epidemiological data. The recent developments in the DSM-5 and the upcoming ICD-11 will supposedly change acceptance and handling of these diagnoses for GPs and patients. Either way, consequences for GPs’ diagnosing and coding behavior are not yet foreseeable.Electronic supplementary materialThe online version of this article (10.1186/s12875-018-0812-8) contains supplementary material, which is available to authorized users.

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Background/Aims: The efficacy of nonpharmacological and multicomponent treatments in patients with dementia is under discussion, as is the ongoing debate which endpoints best measure efficacy. Methods: 194 dyads of dementia patients and their proxies interested in a combined short-term inpatient rehabilitative treatment were assessed in the patients' homes. Results: Analysis showed that cognition in male patients (cognitive part of the Alzheimer's Disease Assessment Scale: p = 0.048) and depressive mood in female patients were improved after treatment at the 3-month follow-up (Geriatric Depression Scale: p = 0.030). Moreover, the burden on male caregivers was reduced (behavioral pathology in Alzheimer's Disease Rating Scale: p = 0.002) at 3 months. Conclusion: Combined short-term rehabilitative treatment of patients and psychosocial intervention for caregivers is modestly effective in patients with dementia and their caregivers, but may be subject to gender-specific effects.

Electrophysiological studies in animals have shown coordinated reactivation of neuronal ensembles during a restricted time period of behavioral inactivity that immediately followed active encoding. In the present study we directly investigated off-line processing of associative memory formation in the human brain. Subjects' regional cerebral blood flow (rCBF) as a surrogate marker of neural activity during rest was measured by MR-based perfusion imaging in a sample of 14 healthy male subjects prior to (Pre2) and after (Post) extensive learning of 24 face-name associations within a selective reminding task (SR). Results demonstrated significant Post-Pre2 rCBF increases in hippocampal and temporal lobe regions, while in a control comparison of two perfusion scans with no learning task in-between (Pre2-Pre1) no differences in rCBF emerged. Post perfusion scanning was followed by a surprise cued associative recall task from which two types of correctly retrieved names were obtained: older names already correctly retrieved at least once during one of the SR blocks, and recent names acquired during the last SR block immediately prior to the Post scan. In the anterior hippocampus individual perfusion increases were correlated with both correct retrievals of older and recent names. By contrast, older but not recently learned names showed a significant correlation with perfusion increases in the left lateral temporal cortex known to be associated with long-term memory. Recent, but not older names were correlated with dopaminergic midbrain structures reported to contribute to the persistence of memory traces for novel information. Although the direct investigation of off-line memory processing did not permit concomitant experimental control, neither intentional rehearsal, nor substantial variations in subjects' states of alertness appear to contribute to present results. We suggest that the observed rCBF increases might reflect processes that possibly contribute to the long-term persistence of memory traces.

Background/Aim: It has been questioned whether cognitive and behavioral scales sufficiently address the impact of dementia on the everyday life of patients. Therefore, other instruments are used, such as scales of activities of daily living (ADL). Our goal was to analyze variables influencing the appraisal of ADL. Method: Prospective cohort study on 202 patients with dementia and their proxies. Results: Two clusters of patients were identified. These clusters differed significantly in their constituting variables and all variables that informants reported regarding the patients. However, severity of dementia and other variables were similar in the two clusters. Conclusion: We conclude that ratings of basic and instrumental ADL by proxy are modulated by the informants’ variables, particularly if these informants are female. Use of ADL scales to assess the impact of dementia or treatment thereof needs to be handled cautiously.

BackgroundIncreasing incidences of dementia necessitate the improvement of supportive measures for patients suffering from this disease and their proxies. Clinicians without psychiatric backgrounds and others involved in appraising the supportive needs of dementia patients, such as those who allocate nursing insurance, base their appraisals on the ability of patients to perform basic and instrumental activities of daily living (B-ADL, iADL). Our aim was to investigate whether a reduced ability of the patient to perform ADL is sufficient to adequately assess the supportive needs of family caregivers.MethodsCross-sectional baseline data were obtained from dementia patients and their proxies in the context of a nationwide prospective cohort study on non-pharmacological treatment of dementia. To our knowledge, the present study is the first country-wide study to assess patients and proxies in their domestic surroundings (e.g. Mini-Mental State Examination (MMSE) Behave-AD, B-ADL and iADL for patients; Quality of Life (QOL) and depression of the proxy).ResultsLogistic and linear regression analysis show that the allocation of nursing care allowance provided by German mandatory nursing insurance is associated with scores on the B-ADL- and iADL scales, but not with the severity of behavioural symptoms or the supportive time the proxies spend on caring. However, the severity of cognitive and non-cognitive symptoms of dementia patients, correlate with each other and both parameters correlate with the time the proxy spends on caring. The time spent on caring is associated with an increase in depression and a reduction in the quality of life of the proxy.ConclusionsBasic and instrumental activities of daily living do not sufficiently reflect the perceived burden of care experienced by the proxy who has to cope with the imposition of the dementia patients’ behavioural symptoms. When allocating nursing care, patients’ behavioural symptoms should also be taken into consideration, because depressive symptoms of proxies are linked to non-cognitive symptoms in dementia patients. To provide better health care, it is necessary to identify and treat psychiatric symptoms in proxies who care for dementia patients as early as possible.

BackgroundSubstituted judgment asks the proxy to decide what the patient would have decided, had he or she been competent. It is unclear whether substituted judgment of the patient's quality of life can serve as a surrogate measure in patients with dementia.Methods212 patients with dementia and their proxies were interviewed in their homes. Dementia syndrome was characterized with cognitive, non-cognitive and functional scales. Quality of life (QoL) was assessed with the QoL-AD.ResultsSubstituted judgment of the patient's QoL was unrelated to dementia severity but also correlated with the proxie's own QoL (r = 0.356; p < 0.001). Gender-specific analysis reveals that for male proxies the most important variable is severity of patient's depression (r = -0.895; p = 0.001) while for female proxies it is the proxie's own QoL (r = 0.371; p < 0.001). Subjective burden correlates with the proxie's QoL in females (r = -0.282; p = 0.001) but not in males (r = -0.163, p = 0.161).ConclusionSubstituted judgment of the patient's QoL does not correlate with dementia severity. Substituted judgment is subject to proxy-related variables in a gender-dependent fashion and therefore not suited to serve as an appropriate surrogate of the patients' quality of life.