Quality of life in dementia: the role of non-cognitive factors in the ratings of people with dementia and family caregivers

2013 ◽  
Vol 25 (7) ◽  
pp. 1097-1105 ◽  
Author(s):  
Maria Fernanda Barroso Sousa ◽  
Raquel Luiza Santos ◽  
Cynthia Arcoverde ◽  
Pedro Simões ◽  
Tatiana Belfort ◽  
...  

ABSTRACTBackground: The validity of self-reported quality-of-life (QoL) assessments of people with dementia (PWD) is a critical issue. We designed this study to determine the non-cognitive factors that are associated with self-reported QoL and PWD QoL as rated by family caregivers.Methods: Using a cross-sectional study, we assessed QoL of 41 people with mild Alzheimer's disease (AD). The individuals with AD and their family caregivers completed the Quality of Life in Alzheimer's Disease Scale (QoL-AD), the Assessment Scale of Psychosocial Impact of the Diagnosis of Dementia (ASPIDD), the Mini-Mental State Examination (MMSE), the Clinical Dementia Rating (CDR) scale, the Cornell Scale for Depression in Dementia (CSDD), the Pfeffer Functional Activities Questionnaire (FAQ), and the Zarit Burden Interview (ZBI). Univariate and multivariate regression analyses were conducted to examine the contribution of the various cofactors.Results: We observed a significant difference (t = 3.292, p < 0.01, d = 0.727) in the QoL measures of PWD after comparing self-reported assessments with the assessments of family caregivers. Linear regression analysis demonstrated that awareness of disease was related to PWD QoL-AD scores. Both the education levels of family caregivers and the depressive symptoms in PWD were related to the family caregivers’ ratings of PWD QoL.Conclusions: The difference between self-reported QoL and family caregivers’ ratings of QoL in people with mild dementia indicated that cognitive impairment was not the primary factor that accounted for the differences in the QoL assessments. Our findings suggested that non-cognitive factors, such as awareness of disease and depressive symptoms, played an important role in the differences between the self-reported AD QoL ratings and the caregivers’ AD QoL ratings. A major implication is that discrete measures such as cognition or level of function are likely to miss important factors that influence QoL.

2016 ◽  
Vol 28 (8) ◽  
pp. 1399-1400 ◽  
Author(s):  
Martin Nikolaus Dichter ◽  
Eva-Maria Wolschon ◽  
Gabriele Meyer ◽  
Sascha Köpke

Dementia is a chronic and currently incurable syndrome. Therefore, quality of life (QoL) is a major goal when caring for people with dementia (Gibson et al., 2010) and a major outcome in dementia research (Moniz-Cook et al., 2008). The measurement of QoL, especially proxy-rating, is challenging because of the proxy-perspective (Pickard and Knight, 2005), reliability (Dichter et al., 2016), validity (O'Rourke et al., 2015), and responsiveness (Perales et al., 2013). Probably due to these challenges, it has not been possible to show positive effects for QoL in almost all non-pharmacological interventions for people with dementia (Cooper et al., 2012). One recommended (Moniz-Cook et al., 2008) and frequently used instrument is the Quality of Life in Alzheimer's Disease scale (QoL-AD), which was originally developed in the US for community-dwelling people with dementia. The QoL-AD consists of 13 items based on a 4-point Likert scale ranging from “1”=poor to “4”=excellent (Logsdon et al., 1999). The original instrument has been adapted for people living in nursing homes (NH) by Edelmann et al. (2005).


2017 ◽  
Vol 28 (6) ◽  
pp. 587-597 ◽  
Author(s):  
Alberto Raggi ◽  
Domenica Tasca ◽  
Raffaele Ferri

AbstractCurrent pharmacological therapies for Alzheimer’s disease (AD) do not modify its course and are not always beneficial. Therefore, the optimization of quality of life represents the best possible outcome achievable in all stages of the disease. Cognitive and behavioural rehabilitation represents the main therapeutic approach for this purpose, also in order to mitigate indirectly the burden of distress of family caregivers. The aim of this mini-review is to go through this theme by discussing cognitive activation, virtual reality and neuromodulation techniques. The practices summarized in this essay are not alternative but, often, complementary therapies to standardized pharmacological treatment. The present mini-review has found encouraging results but also the need for more conclusive evidence for all types of non-invasive/non-pharmacological treatment of AD.


2003 ◽  
Vol 183 (3) ◽  
pp. 248-254 ◽  
Author(s):  
Aimee Spector ◽  
Lene Thorgrimsen ◽  
Bob Woods ◽  
Lindsay Royan ◽  
Steve Davies ◽  
...  

BackgroundA recent Cochrane review of reality orientation therapy identified the need for large, well-designed, multi-centre trials.AimsTo test the hypothesis that cognitive stimulation therapy (CST) for older people with dementia would benefit cognition and quality of life.MethodA single-blind, multi-centre, randomised controlled trial recruited 201 older people with dementia. The main outcome measures were change in cognitive function and quality of life. An intention-to-treat analysis used analysis of covariance to control for potential variability in baseline measures.ResultsOne hundred and fifteen people were randomised within centres to the intervention group and 86 to the control group. At follow-up the intervention group had significantly improved relative to the control group on the Mini-Mental State Examination (P=0.044), the Alzheimer's Disease Assessment Scale – Cognition (ADAS–Cog) (P=0.014) and Quality of Life – Alzheimer's Disease scales (P=0.028). Using criteria of 4 points or more improvement on the ADAS–Cog the number needed to treat was 6 for the intervention group.ConclusionThe results compare favourably with trials of drugs for dementia. CST groups may have worthwhile benefits for many people with dementia.


2021 ◽  
pp. 016402752110434
Author(s):  
Areum Han

Objective: This systematic review and meta-analysis examined effects of mindfulness-based interventions (MBIs) on depressive symptoms, anxiety, stress, and quality of life in family caregivers of people with dementia. Methods: A comprehensive search was conducted within the PubMed, CINAHL, PsycINFO, and SCOPUS databases to identify relevant randomized controlled trials (RCTs). Depending on I2 statistic values for heterogeneity, either a random effects model or fixed effects model was used. Subgroup analyses were conducted according to the types of control groups and MBIs. Results: 15 RCTs met the eligibility criteria. Meta-analyses showed medium to large effects of MBIs on depressive symptoms, anxiety, stress, and quality of life at the immediate posttest. Small to large effects of MBIs were found at follow-up. Conclusions: Future high-quality studies involving different types of MBIs and delivery modes are needed to better understand effects of MBIs on family caregivers of people with dementia and examine effective intervention features.


2020 ◽  
Vol 2020 ◽  
pp. 1-8
Author(s):  
DeokJu Kim

Considering the high socioeconomic costs related to the increasing number of dementia patients and their poor quality of life and that of their families, it is important to identify the condition early on and provide an appropriate intervention. This study organized a recollection-based occupational therapy program: a nonpharmacological intervention consisting of five categories of activities (physical, horticultural, musical, art, and instrumental activity of daily living; IADL) and applied it to those having a mild stage of Alzheimer’s disease. The experimental group participated in a total of 24 sessions––five times per week for one hour per session––while the control group took part in regular activities offered by the existing facilities. The experimental group presented improved cognitive functions, reduced depression, and enhanced quality of life; the two groups showed a statistically significant difference in every category. This study is meaningful in that it made a cognitive stimulation program concerning five different categories, implemented it for people suffering mild dementia, and confirmed positive outcomes. If a systemic version of the program is offered in dementia care facilities, it is expected to make a considerable contribution to the care of dementia patients.


2018 ◽  
Vol 12 (4) ◽  
pp. 408-414 ◽  
Author(s):  
Carla Fabiana Carletti Pessotti ◽  
Lineu Corrêa Fonseca ◽  
Gloria Maria de Almeida Souza Tedrus ◽  
Diana Tosello Laloni

ABSTRACT There are gaps in knowledge regarding how the family caregiver deals with the burden of caring for elderly people with dementia. Objective: To evaluate the family caregivers’ perception of quality of life (QoL), burden, resilience and religiosity and relate them with cognitive aspects and occurrence of neuropsychiatric symptoms of elderly with dementia. Methods: Data from the QoL-AD scale, caregivers’ version, burden interview, resilience scale, Beck depression inventory and PDUREL of 50 family caregivers were correlated with disability assessment for dementia, neuropsychiatric inventory and clinical aspects of 50 elderly with dementia. Results: Linear regression showed that resilience is related with better perceived QoL (p<0.001), severity of dementia (p=0.008), higher intrinsic religiosity (IR) (p=0.044) and lower occurrence of depressive symptoms (p=0.001). Increased burden of family caregivers was associated with a higher occurrence of neuropsychiatric symptoms, education of the elder with dementia, and worse perceived QoL (p<0.001). Lower level of organizational religiosity was associated with severity of dementia. Conclusion: The most resilient caregivers had higher QoL and IR, fewer depressive symptoms, and cared for elders with more severe dementia. Cognitive and sociodemographic aspects, as well as neuropsychiatric symptoms, in the elderly with dementia were associated with QoL and greater caregiver burden.


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