Norwegian National Advisory Unit on Ageing and Health, Vestfold Hospital Trust, Tønsberg, Norway.
Division for Mental Health and Addiction, Vestfold Hospital Trust, Tønsberg, Norway.
PLoS One. 2019 Jul 19;14(7):e0219859. doi: 10.1371/journal.pone.0219859. eCollection 2019.
To identify factors associated with QOL in carers of persons with young-onset Alzheimer's (AD) and frontotemporal dementia (FTD) and explore development in QOL over a two-year period.
Eighty-eight family carers of community-dwelling people with young-onset AD (n = 50) and FTD (n = 38) recruited from Nordic memory clinics. Carer QOL was assessed using the Quality of Life-Alzheimer's Disease questionnaire. Carer burden was assessed by the Relatives' Stress scale and depressive symptoms by the Montgomery-Åsberg Depression Rating Scale. Factors associated with QOL in YOD and development in QOL over time were explored with growth mixture model trajectories and mixed model analyses.
We identified two carer groups of persons with YOD following trajectories with better (n = 53) versus poorer (n = 30) QOL. Carers who reported more burden at baseline had greater odds of belonging to the poorer QOL group (OR 1.1 (1.0-1.2), p = 0.004). Analyses of the development in QOL showed a significant decline in QOL-AD scores among the AD-carers from baseline to two-year follow-up (p = 0.044), while the score remained stable among the FTD-carers. The FTD-carer group had significantly higher mean QOL-AD scores at one- and two-year follow-up (p = 0.022 and 0.045, respectively). However, the difference between the two groups regarding time trend was non-significant. Poorer QOL was associated with increased carer burden (p = 0.01), more depressive symptoms (p = 0.024), and being male carer (p = 0.038).
Higher care burden, more depressive symptoms, and being a male carer was associated with poorer QOL in family carers for persons with YOD. Carers of persons with AD may experience greater challenges in preserving QOL compared to carers of persons with FTD.
确定与早发性阿尔茨海默病（AD）和额颞叶痴呆（FTD）患者照料者的生活质量相关的因素，并探讨在两年期间生活质量的发展情况。
从北欧记忆诊所招募了 88 名社区居住的早发性 AD（n=50）和 FTD（n=38）患者的家庭照料者。使用生活质量-阿尔茨海默病问卷评估照料者的生活质量。使用亲属压力量表评估照料者负担，使用蒙哥马利-阿斯伯格抑郁评定量表评估抑郁症状。使用增长混合模型轨迹和混合模型分析探讨与 YOD 生活质量相关的因素以及随时间的生活质量发展情况。
我们根据轨迹确定了 YOD 患者的两个照料者群体，一个是生活质量较好的群体（n=53），另一个是生活质量较差的群体（n=30）。基线时报告负担较重的照料者更有可能属于生活质量较差的群体（OR 1.1（1.0-1.2），p=0.004）。对生活质量的发展进行分析显示，AD 照料者的 AD 生活质量评分从基线到两年随访期间显著下降（p=0.044），而 FTD 照料者的评分保持稳定。在一年和两年随访时，FTD 照料者的 AD 生活质量评分均显著较高（p=0.022 和 0.045）。然而，两组之间关于时间趋势的差异无统计学意义。生活质量较差与照料者负担增加（p=0.01）、抑郁症状增多（p=0.024）和男性照料者（p=0.038）相关。
较高的照料负担、更多的抑郁症状和男性照料者与 YOD 患者的家庭照料者的生活质量较差相关。与 FTD 患者的照料者相比，AD 患者的照料者可能在保持生活质量方面面临更大的挑战。
