Background: Quality of life (QoL) is an important aspect of disease management in patients with dementia. Yet, little is known about this from a patient’s perspective. The aim of this study is to...Show moreBackground: Quality of life (QoL) is an important aspect of disease management in patients with dementia. Yet, little is known about this from a patient’s perspective. The aim of this study is to gain insight in the QoL and instrumental activities of daily living (IADL) in patients with (early onset) dementia and to examine the possible relationships with openness to discuss concerns (ODC), perceived social support (PSS) and problem-focused coping. The main hypothesis tested if more ODC, PSS and a problem-focused coping strategy were related to higher QoL and IADL. Methods: We studied patients visiting the Amsterdam Alzheimer center for a screening-day, who consented to research in the ADC cohort. Of 206 patients visiting the clinic, 162 patients (35-82 years, M = 63.59, 63,6% male) completed an 88-item self-reported questionnaire. Patients were categorized by their cognitive diagnosis (SCD = 42 , AD = 48, other dementia = 33, psychiatric disorder = 20 or other neurological disorder = 19). Correlations and multiple linear regressions were performed to assess the relationships between QoL, IADL, and the social factors. In addition, we performed a linear regression to track down group differences. Tests with a p < .05 after correction for multiple testing using a False Discovery Rate (FDR), were considered significant. Results: The distribution of the QoL scores was widespread (range 0-96) with a low median (50). Correlations showed that both PSS (r = .41, p = 5.5×10-6), ODC (r = .17, p = .02) and problem-focused coping (r = .19, p =.02) correlated with higher QoL scores. For IADL (median = 15.3) this was, only true for the ODC (r = .22, p = .01). There were no differences found between patient groups. Conclusion: This study indicates that PSS, ODC and problem focused coping are related to higher QoL in patients with (early onset) dementia. There were no group differences, but the average QoL score was lower than expected. Improving patients’ psychosocial factors has the potential to optimize QoL in patients visiting a tertiary memory clinic.Show less
