2016
DOI: 10.1590/2237-6089-2015-0049
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Abstract: Consideration should be given to conducting investigations with more homogeneous samples and use of a clear concept of QoL. The present study highlights the need for future research in a wider range of countries, using instruments specifically for YOD. It would be interesting if studies could trace parallels with late onset dementia groups.

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Cited by 36 publications
(42 citation statements)
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“…Roach & Drummond, 2014;Shnall, 2015;Svanberg, Spector, & Stott, 2011;Thompson, 2011), accommodate changing care needs along the disease trajectory (Bakker et al, 2013;Bakker et al, 2010) and need to seek financial and legal advice as employment is discontinued and spouses give up work to become the main caregiver or take on work to compensate for lost income (Alzheimer's Society, 2015;Chaplin & Davidson, 2016;Picard, Pasquier, Martinaud, Hannequin, & Godefroy, 2011;Ritchie, Banks, Danson, Tolson, & Borrowman, 2015). The need for age-appropriate service design for people diagnosed with YOD has been discussed extensively in a number of comprehensive, non-systematic literature reviews of YOD (Baptista et al, 2016;Beattie et al, 2002;Cabote, Bramble, & McCann, 2015;Millenaar et al, 2016;Richardson et al, 2016;Sansoni et al, 2016;Sansoni et al, 2014;Westera et al, 2014), reports (Austin A, 2016;Brown et al, 2012;Clayton-Turner et al, 2016) and papers across various disciplines (Armari, Jarmolowicz, & Panegyres, 2013;Bakker et al, 2014;Bakker et al, 2010;Ducharme, Kergoat, Antoine, Pasquier, & Coulombe, 2014a;Ducharme et al, 2014b;Gibson et al, 2014;Hvidsten et al, 2014), but there is little evidence of 'what works' in order to inform service design and delivery. The aim of this systematic review was to identify service outcomes that were perceived as important and effective by people living with YOD and their caregivers.…”
Section: Introductionmentioning
confidence: 99%
“…Roach & Drummond, 2014;Shnall, 2015;Svanberg, Spector, & Stott, 2011;Thompson, 2011), accommodate changing care needs along the disease trajectory (Bakker et al, 2013;Bakker et al, 2010) and need to seek financial and legal advice as employment is discontinued and spouses give up work to become the main caregiver or take on work to compensate for lost income (Alzheimer's Society, 2015;Chaplin & Davidson, 2016;Picard, Pasquier, Martinaud, Hannequin, & Godefroy, 2011;Ritchie, Banks, Danson, Tolson, & Borrowman, 2015). The need for age-appropriate service design for people diagnosed with YOD has been discussed extensively in a number of comprehensive, non-systematic literature reviews of YOD (Baptista et al, 2016;Beattie et al, 2002;Cabote, Bramble, & McCann, 2015;Millenaar et al, 2016;Richardson et al, 2016;Sansoni et al, 2016;Sansoni et al, 2014;Westera et al, 2014), reports (Austin A, 2016;Brown et al, 2012;Clayton-Turner et al, 2016) and papers across various disciplines (Armari, Jarmolowicz, & Panegyres, 2013;Bakker et al, 2014;Bakker et al, 2010;Ducharme, Kergoat, Antoine, Pasquier, & Coulombe, 2014a;Ducharme et al, 2014b;Gibson et al, 2014;Hvidsten et al, 2014), but there is little evidence of 'what works' in order to inform service design and delivery. The aim of this systematic review was to identify service outcomes that were perceived as important and effective by people living with YOD and their caregivers.…”
Section: Introductionmentioning
confidence: 99%
“…However, the phenotype of AD in younger people may also diverge from what is seen in older people, with atypical presentations [8] contributing to misattribution of symptoms and prolonged time to diagnosis [2, 9]. The progression of YOD seems to have a more malignant course compared to late-onset dementia (LOD), with more rapid decline and shorter survival [10-12]. The proportion of preventable or even reversible secondary causes is higher in YOD compared to LOD [13].…”
Section: Introductionmentioning
confidence: 99%
“…In that study, no association was found between QoL and other NPS or dementia severity. A recent review noted that the studies on QoL in YOD are heterogeneous in terms of the included dementia subtypes, which may have a negative impact on the consistency of the results [26] . The authors suggest that studies should include homogeneous samples to improve the understanding of the determinants of QoL in YOD.…”
Section: Introductionmentioning
confidence: 99%
“…The authors suggest that studies should include homogeneous samples to improve the understanding of the determinants of QoL in YOD. Moreover, in current research on YOD, unclear definitions of the concept of QoL are used, and therefore it is uncertain which specific aspects of QoL were measured [26] . The multidimensionality of the QoL construct stresses the importance of investigating QoL domains separately to provide clarity regarding the possible differences in specific QoL domains and thereby prevent a loss of information [27][28][29] .…”
Section: Introductionmentioning
confidence: 99%