Differential perceptions of quality of life (QoL) in community-dwelling persons with mild-to-moderate dementia

2014 ◽  
Vol 26 (8) ◽  
pp. 1273-1282 ◽  
Author(s):  
Laura Tay ◽  
Kia Chong Chua ◽  
Mark Chan ◽  
Wee Shiong Lim ◽  
Yue Ying Ang ◽  
...  

ABSTRACTBackground:Discordance between patient- and caregiver-reported quality of life (QoL) is well recognized. This study sought to (i) identify predictors of discrepancy between patient- and caregiver-rated QoL amongst community-dwelling persons with mild-to-moderate dementia, and (ii) differentiate between patients who systematically rate their QoL lower versus those who rate their QoL higher relative to their caregiver ratings.Methods:We recruited 165 patient–caregiver dyads with mild-to-moderate dementia. Quality of life in Alzheimer's disease (QoL-AD) scale was administered separately to patients and caregivers. Data on socio-demographics, interpersonal relationship, and disease-related characteristics (cognitive performance, mood, neuropsychiatric symptoms, functional ability, and caregiver burden) were collected. Patient–caregiver dyads were categorized based on whether patient-rated QoL was lower or higher than their respective caregiver ratings. Univariate analyses and multiple regression models were performed to identify predictors of dyadic rating discrepancy.Results:Mean patient-rated QoL was significantly higher than caregiver rating (mean difference: 3.8 ± 7.1, p < 0.001). Majority (111 (67.2%)) of patients had more positive self-perceived QoL (QoL-ADp (QoL-AD self rated by the patient) > QoL-ADc (QoL-AD proxy-rated by a caregiver)), compared with those (44 (26.7%)) with poorer self-perceived QoL (QoL-ADp < QoL-ADc). Patient's education level, depressive symptoms, and severity of neuropsychiatric symptoms predicted magnitude of discrepancy. Depression (OR = 1.17, 95% CI = 1.02–1.35) and being cared for by other relative (non-spouse/adult child; OR = 7.54, 95% CI = 1.07–53.03) predicted poorer self-perceived QoL.Conclusions:Dyadic rating discrepancy in QoL should draw the clinician's attention to patient depression and neuropsychiatric symptoms. Consideration should also be given to nature of patient–caregiver relationship when discordance between patient and caregiver assessments of QoL is observed.

2018 ◽  
Vol 45 (1-2) ◽  
pp. 91-104 ◽  
Author(s):  
Lara Hvidsten ◽  
Knut Engedal ◽  
Geir Selbæk ◽  
Torgeir Bruun Wyller ◽  
Frøydis Bruvik ◽  
...  

Aims: The aims of this study were to compare quality of life (QOL) in people with young-onset Alzheimer’s (AD) and frontotemporal (FTD) dementia, explore variables associated with QOL, and compare QOL in young-onset dementia (YOD) and late-onset dementia (LOD). Methods: Cross-sectional data from a Nordic multicenter study of 50 community-dwelling participants with AD and 38 with FTD were included. A comparison group consisted of 100 people with LOD. QOL was measured using self-reported Euro-QOL 5-Dimension and the proxy version of Quality of Life in Alzheimer’s Disease (QOL-AD) questionnaire. Neuropsychiatric symptoms and needs were assessed using the Cornell Scale for Depression in Dementia (CSDD), Neuropsychiatric Inventory (NPI), and Camberwell Assessment of Needs in the Elderly. Multiple linear regression and multilevel modeling was used to determine variables associated with QOL. Results: We found no differences between the two YOD groups in QOL. The variables associated with QOL were scores on the CSDD, NPI, and unmet needs. The proxy QOL-AD score in YOD was significantly higher compared to LOD (median 36.0 [IQR 10.0] vs. 33.0 [IQR 9.0]). Conclusion: The QOL in Nordic people with YOD was better compared to people with LOD. Our results show depressive symptoms to be associated with QOL irrespective of age and diagnosis.


2014 ◽  
Vol 10 ◽  
pp. P738-P738
Author(s):  
Laura Tay ◽  
Wee Shiong Lim ◽  
Peng Chew Mark Chan ◽  
Mei Sian Chong

2012 ◽  
Vol 24 (S1) ◽  
pp. S35-S40 ◽  
Author(s):  
Ralf Ihl

ABSTRACTResearch into Gingko biloba extract EGb 761® has been ongoing for many years. Early studies showed that the extract was superior to placebo in improving symptoms of dementia, and this has been confirmed by more recent research. The GINDEM-NP, GOTADAY and GOT-IT! studies showed that 240 mg/day EGb 761® improved cognitive function, neuropsychiatric symptoms, activities of daily living, and quality of life in patients with mild to moderate dementia compared with placebo, with results reproducible in independent trials. The strength of the effect in terms of improvements in neurosensory symptoms associated with old age and dementia was strong enough to be detected by caregivers and independent clinicians. A combination of 240 mg/day EGb 761® and 10 mg/day (initially 5 mg/day) donepezil was also more effective than either drug alone. Regarding the improvement of neuropsychiatric symptoms, a cross-comparison of studies with different antidementia agents suggests that EGb 761® is at least as effective as memantine, galantamine, and donepezil. Safety data revealed no important safety concerns with EGb 761®.


2010 ◽  
Vol 23 (2) ◽  
pp. 214-220 ◽  
Author(s):  
Seung-Ho Ryu ◽  
Jee Hyun Ha ◽  
Doo-Heum Park ◽  
Jaehak Yu ◽  
Gill Livingston

ABSTRACTBackground: Several studies of patients with mild cognitive impairment (MCI) have revealed that this population, like people with dementia, have neuropsychiatric symptoms (NPS) as well as memory impairment. No study has reported on the natural history and course of NPS in MCI although this is important in terms of management. We aimed to determine the persistence of NPS over six months in participants with MCI.Method: The Neuropsychiatric Inventory (NPI) was used to rate the severity of NPS in 241 consecutive referrals with MCI from a Korean clinic at baseline and in 220 patients at 6-month follow-up. We also collected information about the cognition and quality of life of patients and their caregivers.Results: Ninety-seven (44.1%) MCI participants who completed the 6-month follow-up exhibited at least one NPS at baseline; 60 (27.3%) were clinically significant NPS. Seventy (72.1%) of those with any symptom had at least one persistent NPS at 6-month follow-up, and 44 (73.3%) of those with clinically significant symptoms had at least one significant and persistent NPS at 6-month follow-up. Those with persistent symptoms had more severe baseline symptoms. Both patients and caregivers had a poorer quality of life when the patient had at least one clinically significant symptom.Conclusions: NPS were highly persistent overall in older people with MCI. Persistence was predicted by having more severe symptoms at baseline. Clinically significant levels of NPS were associated with decreased quality of life. We conclude that clinicians should be aware that NPS symptoms in MCI usually persist.


2019 ◽  
Vol 3 (3) ◽  
Author(s):  
Taylor Rigby ◽  
Robert T Ashwill ◽  
David K Johnson ◽  
James E Galvin

Abstract Background and Objectives Dementia caregiving has been associated with increased burden, depression, grief, a decreased sense of well-being and quality of life, and a weakening of social support. Little is known about the experience of caregiving in Dementia with Lewy Bodies (DLB). The present study examines differences in the caregiving experience of spouse versus adult child caregivers of individuals with DLB. Research Design and Methods In this cross-sectional analytic study of spouses (n = 255) and adult children (n = 160) caregivers of individuals with DLB, participants completed an online survey of burden, grief, depression, well-being, quality of life, and social support. Results Adult child caregivers were more likely to care for women (p &lt; .001) and see the care recipient less often (p &lt; .001) than spouses. Adult child caregivers reported lower quality of life (p &lt; .001) and more caregiver burden (p &lt; .009), but also greater social support (p &lt; .001) than spouses. Between group analyses of caregiver type by disease severity demonstrated that spousal caregivers experience greater grief with advancing disease (p = .005), while adult child caregivers increase social support with advancing disease (p &lt; .001). Discussion and Implications Spouses and adult children experience DLB caregiving differently. This was explained by the younger age of the adult child caregiver, frequency of contact with the care recipient, and differences in the care recipient’s characteristics, frequency of neuropsychiatric symptoms, and disease severity. DLB caregiver support for this population should target psychoeducation for complicated neuropsychiatric symptoms in the care recipient. Screening all DLB caregivers for burden, grief, and depression is suggested to identify those that may benefit most from intervention. Spouses specifically may benefit from interventions that target increasing social support, while adult child caregivers may benefit from interventions aimed at mitigating burden and improving quality of life.


2017 ◽  
Vol 30 (3) ◽  
pp. 437-446 ◽  
Author(s):  
J. C. L. van Duinen-van den IJssel ◽  
B. Appelhof ◽  
S. A. Zwijsen ◽  
M. Smalbrugge ◽  
F. R. J. Verhey ◽  
...  

ABSTRACTBackground:Both neuropsychiatric symptoms (NPS) and psychotropic drug use (PDU) are common in institutionalized People with Young Onset Dementia (PwYOD) and can produce negative outcomes such as reduced quality of life and high workload. In community-dwelling PwYOD, NPS are found to be associated with unmet care needs. This emphasizes the importance of a care program for the management of NPS in institutionalized PwYOD that also addresses unmet care needs and PDU. The objectives of the Behavior and Evolution of Young ONset Dementia part 2 (BEYOND-II) study are to develop a care program for the management of NPS in institutionalized PwYOD and to evaluate its effectiveness.Methods:The care program consists of an educational program combined with an intervention to manage NPS with the following five steps: the evaluation of psychotropic drug prescription, detection, analysis (including the detection of unmet needs), treatment and the evaluation of NPS. A stepped wedge design will be used to evaluate its effectiveness. The primary outcomes are agitation and aggression and other NPS. The secondary outcomes are PDU, quality of life, the workload of nursing staff and job satisfaction. Additionally, a process analysis and a cost-consequence analysis will be conducted.Conclusions:The study protocol of the Beyond-II study describes the development, implementation and evaluation of a care program for the management of NPS in institutionalized PwYOD. This care program provides a structured method for the management of NPS, in which unmet needs and PDU are also addressed.


2014 ◽  
Vol 72 (12) ◽  
pp. 931-937 ◽  
Author(s):  
Raquel Luiza Santos ◽  
Maria Fernanda Barroso de Sousa ◽  
José Pedro Simões-Neto ◽  
Marcela Lima Nogueira ◽  
Tatiana T. Belfort ◽  
...  

Objective To investigate quality of life (QoL) of caregivers of mild and moderate dementia and the aspects related to QoL. Method Cross-sectional assessment of dyads of people with dementia (PwD) and family caregivers (n=88). Results Burden (p<0.05) and depressive symptoms (p<0.001) were related to caregivers’ QoL in both stages of dementia. In mild dementia, caregivers’ depressive symptoms (p<0.001) and PwD neuropsychiatric symptoms (p<0.001) were related to burden. PwD aberrant motor activity (p<0.001) and anxiety (p<0.001), and caregiver-reported QoL domains of friends (p<0.001) and mood (p<0.05) were related to depressive symptoms. In moderate dementia, self-reported QoL (p<0.01) and anxiety (p<0.01), and PwD anxiety (p<0.01) were related to burden. Caregivers’ anxiety (p<0.001) and self-reported QoL (p<0.001) were related to depressive symptoms. Conclusion Burden and depressive symptoms were related to QoL of caregivers of mild and moderate dementia. However, they are driven by different factors according to dementia severity.


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