Explaining caregiver burden in a large sample of UK dementia caregivers: The role of contextual factors, behavioural problems, psychological resilience, and anticipatory grief

Gilsenan, Jane; Gorman, Colin; Shevlin, Mark

doi:10.1080/13607863.2022.2102138

Cited by 23 publications

(6 citation statements)

References 60 publications

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“…All of these factors may increase the sense of strain, and may therefore intensify dementia grief. These data are consistent with previous research showing that strain is associated with higher levels of pre-death grief in family caregivers of people with dementia [8,16,34,47].…”

Section: Discussionsupporting

confidence: 92%

Relationship between Depressive Symptoms, Caregiver Strain, and Social Support with Dementia Grief in Family Caregivers

Sánchez-Alcón,

Garrido-Fernández,

Cano-Rojas

et al. 2024

Medicina

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Background and Objectives: Dementia grief in family caregivers of people with dementia refers to grieving prior to the death of the care recipient. It is related to psychosocial risk factors that may have a negative impact on the health of these family caregivers. This study aimed to describe the relationship between depressive symptoms, caregiver strain, and social support with dementia grief in family caregivers of people with dementia. Materials and Methods: A descriptive correlational cross-sectional study was conducted. A total of 250 family caregivers of people with dementia participated. Dementia grief was the main variable, and depressive symptoms, caregiver strain, and social support were assessed. Additionally, socio-demographic data were collected. Descriptive statistics were calculated, and a bivariate correlation analysis and a multiple linear regression analysis were performed for dementia grief. Results: Higher scores for dementia grief were found in women, in family caregivers of patients at advanced stages of dementia, and in family caregivers with a low level of education. High levels of depressive symptoms and caregiver strain and low levels of social support indicated greater intensity of dementia grief. Depressive symptomatology was the variable with the greatest influence on dementia grief. Caregiver strain and social support also related to dementia grief, but to a lesser extent. Conclusions: In family caregivers, depressive symptoms, caregiver strain, and social support are related to the intensity of dementia grief, with a greater influence of depressive symptoms. Moreover, being female, having a low level of education, and caring for a care recipient at an advanced stage of dementia are factors associated with increased dementia grief. Concerning study limitations, the sample was restricted, belonging to a specific region of Spain and to a Provincial Federation of associations. It is necessary to exercise caution in generalizing results due to the sociodemographic and geographical characteristics of the sample.

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Section: Discussionsupporting

confidence: 92%

Relationship between Depressive Symptoms, Caregiver Strain, and Social Support with Dementia Grief in Family Caregivers

Sánchez-Alcón,

Garrido-Fernández,

Cano-Rojas

et al. 2024

Medicina

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“…During the course of dementia, people with dementia, their families, and informal caregivers may need professional support to deal with the consequences of the disease [1][2][3][4]. Supportive interventions [5] are complex in their development, delivery, and impact, as they involve multiple components, aim at multiple outcomes, and are delivered in different settings.…”

Section: Introductionmentioning

confidence: 99%

The Implementation Success of Technology-Based Counseling in Dementia Care: Scoping Review

Bauernschmidt,

Wittmann,

Hirt

et al. 2024

JMIR Aging

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Background Implementing technology-based counseling as a complex intervention in dementia care poses challenges such as adaptation to stakeholders’ needs and limited resources. While studies have examined the effectiveness of technology-based counseling, its successful implementation remains largely unexplored. Objective We aimed to review the knowledge about the implementation success of technology-based counseling interventions for people with dementia and their informal caregivers. Methods We conducted a scoping review and systematically searched CINAHL, the Cochrane Library including the Cochrane Central Register of Controlled Trials, MEDLINE, PsycINFO, and Web of Science Core Collection databases (April 2021) in combination with citation searching and web searching (November 2021). Studies reporting on technology-based counseling interventions for people with dementia or their informal caregivers were included, irrespective of the design. We used the conceptual framework for implementation outcomes to operationalize implementation success and applied the outcomes acceptability, adoption, appropriateness, feasibility, fidelity, implementation cost, penetration, and sustainability as categories to inform data extraction. We identified dimensions within the categories and synthesized results narratively and graphically. Results We included 52 publications reporting on 27 technology-based counseling interventions. The studies were conducted in 9 countries and published between 1993 and 2021. As the design of the included studies varied, the number of participants and the type of data reported varied as well. The intervention programs were heterogeneous and ranged from single counseling interventions (such as helpline services) to counseling as part of a multicomponent program. Telephone, email, videoconferencing, social media (respectively chats), and web-based platforms were used for delivering counseling. We found data on appropriateness for all interventions and data on acceptability for most interventions, describing aspects such as consumer-perceived usefulness and helpfulness of services, as well as satisfaction. Information on the other categories of adoption, feasibility, fidelity, implementation cost, penetration, and sustainability was fragmented. Conclusions The scope and depth of information on conceptual categories of the implementation success of technology-based counseling for people with dementia and informal caregivers varied. The data only partially covered the concept of implementation success, which highlights the need for a systematic evaluation accompanying the implementation. The application of theoretical approaches for implementation and adherence to the framework for developing and evaluating complex interventions are required to promote the implementation of complex interventions and to comprehensively assess implementation success. Trial Registration PROSPERO CRD42021245473; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=245473

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“…The majority of people with dementia are cared for at home, mainly by a spouse [4]. Informal carers of people with dementia face numerous challenges, which have been described frequently in terms of burden [5][6][7] and stress [8,9]. Depressive symptoms are a great challenge for both people with dementia [10] and their informal carers [11,12].…”

Section: Introductionmentioning

confidence: 99%

Technology-Based Counselling for People with Dementia and Their Informal Carers: A Systematic Review and Meta-Analysis

Bauernschmidt

Hirt

Langer

et al. 2023

JAD

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Background: Information technology can enhance timely and individual support for people with Alzheimer’s disease and other dementias and their informal carers. Objective: To review the effectiveness of technology-based counselling interventions for people with dementia and informal carers. Methods: Randomized controlled trials of remote dementia counselling interventions were included. We searched CINAHL, Cochrane Library, MEDLINE, PsycINFO, and the Web of Science Core Collection (April 2021) in combination with citation tracking and free web searching (October to November 2021). We provide meta-analyses for caregiver depression, burden, and self-efficacy/mastery and structured reporting for other outcomes. The Grading of Recommendations Assessment, Development and Evaluation approach and the Risk of Bias 2 tool were applied. Results: We included five randomized controlled trials involving 880 participants. Interventions were provided for carers (four studies) or dyads (one study). Carers were predominantly women and were the spouses or children of people with dementia. Counselling was delivered via telephone or videoconference with two to 23 sessions over 1 to 12 months. Control groups received educational and resource materials only, standard (helpline) services, non-directive support, or home visits. Meta-analysis for our primary outcome, depressive symptoms in carers, revealed no statistically significant effect (SMD –0.15; 95% CI –0.40 to 0.10). There were also no significant effects on burden and self-efficacy/mastery. We rated the certainty of evidence as low to very low and all outcomes at an overall high risk of bias. Conclusion: The effectiveness of technology-based counselling interventions for people with dementia and informal carers remains uncertain. Theory-based approaches are needed for the development and evaluation of these interventions.

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Explaining caregiver burden in a large sample of UK dementia caregivers: The role of contextual factors, behavioural problems, psychological resilience, and anticipatory grief

Cited by 23 publications

References 60 publications

Relationship between Depressive Symptoms, Caregiver Strain, and Social Support with Dementia Grief in Family Caregivers

Relationship between Depressive Symptoms, Caregiver Strain, and Social Support with Dementia Grief in Family Caregivers

The Implementation Success of Technology-Based Counseling in Dementia Care: Scoping Review

Technology-Based Counselling for People with Dementia and Their Informal Carers: A Systematic Review and Meta-Analysis

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