A pilot study: Resistive behavior in the context of informal caregiver-assisted activities of daily living

Spigelmyer, Pamela C.; Schreiber, James B.

doi:10.1016/j.gerinurse.2019.01.005

Cited by 15 publications

(20 citation statements)

References 16 publications

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“…Most people with dementia live at home and are cared for primarily by their spouse or adult children, the informal caregivers [ 2 ]. Caring for people with dementia is perceived as one of the most stressful experiences, as family caregivers may face long-term problems of managing activities of daily living [ 3 , 4 ], behavioral and psychological symptoms [ 5 , 6 ], and organizing care and providing emotional support [ 7 , 8 ]. However, due to a lack of supportive resources and knowledge of dementia, family caregivers have low confidence in managing caregiving [ 9 ] and do not know what to do when their relatives have dementia-related behavioral problems, need emotional support, and require the coordination of dementia care [ 10 ].…”

Section: Introductionmentioning

confidence: 99%

Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis

Leng¹,

Zhao²,

Xiao³

et al. 2020

J Med Internet Res

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Background Caring for people with dementia is perceived as one of the most stressful and difficult forms of caring. Family caregivers always experience high levels of psychological burden and physical strain, so effective and practical support is essential. Internet-based supportive interventions can provide convenient and efficient support and education to potentially reduce the physical and psychological burden associated with providing care. Objective This review aimed to (1) assess the efficacy of internet-based supportive interventions in ameliorating health outcomes for family caregivers of people with dementia, and (2) evaluate the potential effects of internet-based supportive intervention access by caregivers on their care recipients. Methods An electronic literature search of the PubMed, EMBASE, Web of Science, CINAHL, Cochrane Library, and PsycINFO databases was conducted up to January 2020. Two reviewers (ML and YZ) worked independently to identify randomized controlled trials (RCTs) that met the inclusion criteria and independently extracted data. The quality of the included RCTs was evaluated using the approach recommended by the Cochrane Handbook for Systematic Reviews of Interventions. Standardized mean differences (SMDs) with 95% CIs were applied to calculate the pooled effect sizes. Results In total, 17 RCTs met the eligibility criteria and were included in this systematic review. The meta-analysis showed that internet-based supportive interventions significantly ameliorated depressive symptoms (SMD=–0.21; 95% CI –0.31 to –0.10; P<.001), perceived stress (SMD=–0.40; 95% CI –0.55 to –0.24; P<.001), anxiety (SMD=–0.33; 95% CI –0.51 to –0.16; P<.001), and self-efficacy (SMD=0.19; 95% CI 0.05-0.33; P=.007) in dementia caregivers. No significant improvements were found in caregiver burden, coping competence, caregiver reactions to behavioral symptoms, or quality of life. Six studies assessed the unintended effects of internet-based supportive intervention access by caregivers on their care recipients. The results showed that internet-based supportive interventions had potential benefits on the quality of life and neuropsychiatric symptoms in care recipients. Conclusions Internet-based supportive interventions are generally effective at ameliorating depressive symptoms, perceived stress, anxiety, and self-efficacy in dementia caregivers and have potential benefits on care recipients. Future studies are encouraged to adopt personalized internet-based supportive interventions to improve the health of family caregivers and their care recipients. Trial Registration PROSPERO CRD42020162434; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=162434

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Section: Introductionmentioning

confidence: 99%

Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis

Leng¹,

Zhao²,

Xiao³

et al. 2020

J Med Internet Res

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show abstract

“…Therefore, there is hope that family caregivers can likewise boost their own self‐esteem by learning how to help their family members overcome ADL disabilities. Spigelmyer and Schreiber 20 pointed out that future research is needed to identify interventions to help caregivers manage their own upset feelings when resistiveness occurs. The findings of our research will be utilised for developing those interventions.…”

Section: Discussionmentioning

confidence: 99%

“…Recently, according to a systematic review of dementia family caregivers' needs, support needs for ADL and instrumental ADL were identified 18 . Persons with dementia often need assistance with ADL, and resistiveness to care often occurs when providing support 19,20 . Caregivers often deal with care recipients who refuse to bathe, receive personal care, or take medications.…”

Section: Introductionmentioning

confidence: 99%

Practitioners' identification of informal caregivers' difficulties with activities of daily living interventions for older people with dementia in Japan

et al. 2021

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Background Older people with dementia who cannot perform daily activities independently due to cognitive impairment need support at home and in the community. This study identified aspects of activities of daily living (ADL) interventions that advanced dementia care practitioners recognise as challenging for informal caregivers to perform. Methods We conducted a self‐administered cross‐sectional survey on advanced dementia care practitioners, including certified nurses, specialising in gerontological, community health, home care, and visiting nursing, nurses specialising in dementia certified by the Japanese Nursing Association, and dementia care leaders certified by prefectural governors. The participants rated a caregivers' extent of difficulty in aspects of ADL interventions on a four‐point Likert scale. Factor analysis was performed to determine ADL intervention aspects that are recognised by advanced dementia care practitioners as challenging for informal caregivers. Results The highest loaded factors for mild, moderate, and severe cognitive impairment stages were ‘right time to draw attention,’ ‘opportunities to perform ADL,’ and ‘communicating how to perform ADL without giving up,’ respectively. Therefore, it is imperative to educate informal caregivers about the effects of cognitive impairment on ADL performance in people with dementia and enable them to provide concrete ADL interventions and tips to support the persons' autonomy and independence. The Cronbach's alpha values of the highest loaded factors for mild, moderate, and severe cognitive impairment stages were 0.851, 0.925, and 0.946, respectively. Moreover, the cumulative contribution ratios of each stage were 46.04%, 50.52%, and 47.36%, respectively. Conclusion This study dealt with identifying informal caregivers' difficulties with ADL interventions across the stages of dementia. Informal caregivers should be supported on aspects of ADL interventions that are potentially difficult for them to perform. Useful educational content and approaches in training programs for informal caregivers should be developed to enable them to help people with Alzheimer's disease maintain ADL performance toward ‘ageing in place’ even as the disease progresses.

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“…RTC is also one of the most commonly reported types of problematic behaviors of CRs (Ishii et al, 2012; Mahoney et al, 1999); 17% to 27% of professional CGs reported RTC in formal care settings (Ishii et al, 2012), and 49% to 71% of family CGs reported RTC in informal (home) care settings (Fauth et al, 2016; Shirai & Koerner, 2018; Spigelmyer & Schreiber, 2019). Although RTC is often reported by formal and informal CGs of dependent elders in general, including CRs with and without memory or cognitive issues (National Alliance of Caregiving and AARP, 2020), the negative impact of RTC has been more frequently studied in formal caregiving settings, such as institutions and group homes for Alzheimer’s and related dementia patients (e.g., Chiao et al, 2015; Ishii et al, 2012).…”

Section: Rtcmentioning

confidence: 99%

“…Recently, a few studies examined RTC during ADL assistance in non-institutional, home settings (Fauth et al, 2016; Shirai & Koerner, 2018; Spigelmyer & Schreiber, 2019). For example, in a sample of 234 family CGs, Fauth et al (2016) found that the majority (59.8%) of participants provided support in ADL activities and experienced RTC.…”

Section: Rtcmentioning

confidence: 99%

Family Caregiver Experience of Resistance to Care: Occurrence Patterns, Context, and Impact on Caregiver

Shirai

Koerner

2021

Qual Health Res

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Although the extant literature identifies resistance to care (RTC) as one of the most frequently reported and impactful caregiver (CG) stressors, typical studies that rely on quantitative measures of RTC do not fully explain how and why RTC negatively influences CGs’ well-being. As such, it is difficult to develop specific intervention strategies to support CGs in dealing with RTC. Informed by existing literature and tenets from Stress Theory, the current study includes semi-structured interviews with 19 family CGs of community-dependent (non-institutionalized) elders, regarding their RTC experiences. Through a directed qualitative content analysis, we explored occurrence patterns, contextual factors of when and how RTC occurs, how CGs respond to RTC, and its potential impact on CGs’ subjective stress. The results revealed distinguishable characteristics of four types of RTC: Frequent-Pervasive, Frequent-Delimited, Transition-Activated, and Shock-to-Unfamiliar/Unexpected. We discuss how recognition of those types of RTC can be integrated into CG support intervention strategies.

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A pilot study: Resistive behavior in the context of informal caregiver-assisted activities of daily living

Cited by 15 publications

References 16 publications

Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis

Internet-Based Supportive Interventions for Family Caregivers of People With Dementia: Systematic Review and Meta-Analysis

Practitioners' identification of informal caregivers' difficulties with activities of daily living interventions for older people with dementia in Japan

Family Caregiver Experience of Resistance to Care: Occurrence Patterns, Context, and Impact on Caregiver

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