Changes in caregiver burden and health‐related quality of life of informal caregivers of older people with Dementia: evidence from the European RightTimePlaceCare prospective cohort study

Bleijlevens, Michel H. C.; Stolt, Minna; Stephan, Astrid; Zabalegui, Adelaida; Saks, Kai; Sutcliffe, Caroline; Lethin, Connie; Soto, María; Zwakhalen, Sandra

doi:10.1111/jan.12561

Cited by 95 publications

(96 citation statements)

References 56 publications

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“…However, our finding that EQ-5D is a relatively insensitive measure of the impact of caring is consistent with a previous longitudinal study where the mean ZBI score was higher for caregivers of home-living patients with dementia (32.4) than for caregivers of patients with dementia in long-term care (24.9), while the mean EQ-5D index score was similar for both types of caregiver (0.76 and 0.78, respectively) [24]. Furthermore, for a subgroup of caregivers where the patient transitioned from home to institutional care during the 3-month follow-up period, the mean ZBI score decreased from 35.4 to 22.4, while the caregiver EQ-5D index score remained stable at 0.77 [24]. …”

Section: Discussionsupporting

confidence: 90%

How useful is the EQ-5D in assessing the impact of caring for people with Alzheimer’s disease?

Reed

Barrett

Lebrec

et al. 2017

Health Qual Life Outcomes

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BackgroundThe impact on informal caregivers of caring for people with Alzheimer's disease (AD) dementia can be substantial, but it remains unclear which measures(s) best assess such impact. Our objective was to use data from the GERAS study to assess the ability of the EuroQol 5-dimension questionnaire (EQ-5D) to measure the impact on caregivers of caring for people with AD dementia and to examine correlations between EQ-5D and caregiver burden.MethodsGERAS was a prospective, non-interventional cohort study in community-dwelling patients with AD dementia and their informal caregivers. The EQ-5D and Zarit Burden Interview (ZBI) were used to measure health-related quality of life and caregiver burden, respectively. Resource-use data collected included caregiver time spent with the patient on activities of daily living (ADL). Spearman correlations were computed between EQ-5D scores, ZBI scores, and time spent on instrumental ADL (T-IADL) at baseline, 18 months, and for 18-month change scores. T-IADL and ZBI change scores were summarized by EQ-5D domain change category (better/stable/worse).ResultsAt baseline, 1495 caregivers had mean EQ-5D index scores of 0.86, 0.85, and 0.82, and ZBI total scores of 24.6, 29.4, and 34.1 for patients with mild, moderate, and moderately severe/severe AD dementia, respectively. Change in T-IADL showed a stronger correlation with change in ZBI (0.12; P < 0.001) than with change in EQ-5D index score (0.02; P = 0.546) although both correlations were very weak. Worsening within EQ-5D domains was associated with increases in ZBI scores, although 68%–90% of caregivers remained stable within each EQ-5D domain. There was no clear pattern for change in T-IADL by change in EQ-5D domain.ConclusionsEQ-5D may not be the optimum measure of the impact of caring for people with AD dementia due to its focus on physical health. Alternative measures need further investigation.

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Section: Discussionsupporting

confidence: 90%

How useful is the EQ-5D in assessing the impact of caring for people with Alzheimer’s disease?

Reed

Barrett

Lebrec

et al. 2017

Health Qual Life Outcomes

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“…In Spain, the caregiver role is usually taken on by a family member (Alvira et al, ; Wimo et al, ). It is highly demanding care and provokes burden, particularly due to a lack of specific training and scant support from other family members (Bleijlevens et al, ; Chiao et al, ; Zabalegui, Navarro, et al, ). Caregiving generates positive aspects with respect to caregiver self‐esteem, a feeling of satisfaction with the work carried out and the ability to overcome certain difficulties and the strengthening of the bond with the person receiving care (Chiao et al, ).…”

Section: Introductionmentioning

confidence: 99%

Effectiveness of a psychoeducational intervention for caregivers of People With Dementia with regard to burden, anxiety and depression: A systematic review

Frías

Garcia‐Pascual

Montoro

et al. 2020

Journal of Advanced Nursing

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Aim To assess the effectiveness of psychoeducational interventions with respect to burden, anxiety and depression in family caregivers of People With Dementia living at home. Background In dementia, the family assumes the role of main caregiver, maintaining the patient in a good state of health. Nevertheless, burden, anxiety and depression may have negative repercussions in caregivers. Therefore, professional supports through psychoeducational programmes are recommended as interventions for improving caregivers' health. Design A quantitative systematic review. Data Sources Electronic searches were performed in CINAHL/AMED/CENTRAL/Web of Science/LILACS/PUBMED from January 2005–August 2018. Review Methods The review was conducted using the JADAD scale to assess bias risk and the quality of the randomized controlled trials (RCTs) and the CONSORT instrument to assess study quality report. The extracted data were reviewed by independent reviewer pairs. The review was reported using PRISMA. Results A total of 18 RCTs met inclusion criteria. Seven were classified as Technology‐based Interventions and 11 as Group‐based Interventions. Conclusion Psychoeducational interventions for caregivers allow them to increase their knowledge of the illness, develop problem‐solving skills and facilitate social support. Technology‐based Interventions significantly affect burden while Group‐based Interventions affect anxiety, depression, insomnia and burden and quality of life and self‐efficacy. Impact Research findings can be used to classify caregivers in future interventions according to illness stage to obtain more precise results.

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“…The term ‘caregiver burden’ is often used to describe this phenomenon, and it can be defined as “the degree to which a carer’s emotional or physical health, social life or financial status have suffered as a result of caring for their relative”[12]. Caregiver burden increases the risk of depression and anxiety disorder [13–17], and informal caregivers of people with dementia living at home experience care as more burdensome compared to informal caregivers of recently institutionalized people with dementia [18]. …”

Section: Introductionmentioning

confidence: 99%

The influence of day care centres designed for people with dementia on family caregivers – a qualitative study

2017

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BackgroundDementia is one of the most challenging age-related illnesses for family caregivers, whose care-related burden is well known. Research indicates that day care centres (DCCs) can reduce the caregiver burden and help family caregivers to cope with demands; however, the current body of knowledge is still tentative and inconsistent, and more research is recommended. The aim of this study is to provide an extended understanding of the situation of family caregivers and to examine to what extent DCCs can meet their need for support and respite.MethodsThis study has a qualitative descriptive design using in-depth interviews with 17 family caregivers of people with dementia attending DCCs. The data analysis was undertaken using systematic text condensation.ResultsCaregivers experience a complex role, with added responsibilities, new tasks, and emotional and relational challenges that are expressed through distressing emotions and demands for interaction. Additionally, the caregiving role leads to positive experiences, such as acceptance and adaptation, support and help, and positive changes in the relationship. Day care relieves family caregivers by meeting the person with dementia’s needs for social community, nutrition, physical activity, and structure and variety in everyday life. Using a DCC led to a higher quality of time spent together and easier cooperation, but it also produced some hard feelings and challenging situations. DCCs gave the caregivers a feeling of freedom and increased the time available to be spent on their own needs, to be social and to work or do practical tasks undisturbed.ConclusionsDCCs for people with dementia can give family caregivers support and relief and have a positive impact on the relationship between the family caregiver and the person with dementia. A more individualized program, in addition to flexible opening hours, would make DCCs even more effective as a respite service, positively influencing the family caregiver’s motivation and ability to care and postponing the need for nursing home placement.

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Changes in caregiver burden and health‐related quality of life of informal caregivers of older people with Dementia: evidence from the European RightTimePlaceCare prospective cohort study

Cited by 95 publications

References 56 publications

How useful is the EQ-5D in assessing the impact of caring for people with Alzheimer’s disease?

How useful is the EQ-5D in assessing the impact of caring for people with Alzheimer’s disease?

Effectiveness of a psychoeducational intervention for caregivers of People With Dementia with regard to burden, anxiety and depression: A systematic review

The influence of day care centres designed for people with dementia on family caregivers – a qualitative study

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