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The aim of this study was to investigate survival time and life-expectancy in people with young-onset dementia (YOD) and to examine the relationship with age, sex, dementia subtype and comorbidity.
Design, Setting and Participants:
Survival was examined in 198 participants in the Needs in Young-onset Dementia study, including participants with Alzheimer’s dementia (AD), vascular dementia (VaD) and frontotemporal dementia (FTD).
The primary outcomes were survival time after symptom onset and after date of diagnosis. Cox proportional hazards models were used to explore the relationship between survival and age, sex, dementia subtype and comorbidity. Additionally, the impact on remaining life expectancy was explored.
During the six-year follow-up, 77 of the participants died (38.9%), 78 participants survived (39.4%) and 43 were lost to follow-up (21.7%). The mean survival time after symptom onset and diagnosis was 209 months (95% CI 185-233) and 120 months (95% CI 110-130) respectively. Participants with AD had a statistically significant shorter survival compared with VaD participants, both regarding survival after symptom onset (p = 0.047) as well as regarding survival after diagnosis (p = 0.049). Younger age at symptom onset or at diagnosis was associated with longer survival times. The remaining life expectancy, after diagnosis, was reduced with 51% for males and 59% for females compared to the life expectancy of the general population in the same age groups.
It is important to consider the dementia subtype when persons with YOD and their families are informed about the prognosis of survival. Our study suggests longer survival times compared to other studies on YOD, and survival is prolonged compared to studies on LOD. Younger age at symptom onset or at diagnosis was positively related to survival but diagnosis at younger ages, nevertheless, still diminishes life expectancy dramatically.
A decline in everyday cognitive functioning is important for diagnosing dementia. Informant questionnaires, such as the informant questionnaire on cognitive decline in the elderly (IQCODE), are used to measure this. Previously, conflicting results on the IQCODEs ability to discriminate between Alzheimer's disease (AD), mild cognitive impairment (MCI), and cognitively healthy elderly were found. We aim to investigate whether specific groups of items are more useful than others in discriminating between these patient groups. Informants of 180 AD, 59 MCI, and 89 patients with subjective memory complaints (SMC) completed the IQCODE. To investigate the grouping of questionnaire items, we used a two-dimensional graded response model (GRM).The association between IQCODE, age, gender, education, and diagnosis was modeled using structural equation modeling. The GRM with two groups of items fitted better than the unidimensional model. However, the high correlation between the dimensions (r=.90) suggested unidimensionality. The structural model showed that the IQCODE was able to differentiate between all patient groups. The IQCODE can be considered as unidimensional and as a useful addition to diagnostic screening in a memory clinic setting, as it was able to distinguish between AD, MCI, and SMC and was not influenced by gender or education. (JINS, 2011, 17, 674–681)
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