The roles of unmet needs and formal support in the caregiving satisfaction and caregiving burden of family caregivers for persons with dementia

Park, Myonghwa; Choi, Sora; Lee, Song Ja; Kim, Seon Hwa; Kim, Jinha; Go, Younghye; Lee, Dong Hoon

doi:10.1017/s104161021700196x

Cited by 40 publications

(47 citation statements)

References 30 publications

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Section: Introductionmentioning

confidence: 99%

“…In this context, improving the sustainability of unpaid care work [37] has become an area of intense interest. FCs view caregiving as sustainable when they are able to strike a favourable balance between the rewards and demands of caregiving [37] amidst their other competing responsibilities. Technology-based interventions are showing the potential to support FCs caring for older adultsespecially those caring for persons with dementia [38][39][40].…”

Section: Introductionmentioning

confidence: 99%

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The care capacity goals of family carers and the role of technology in achieving them

et al. 2020

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Background: As global populations age, governments have come to rely heavily on family carers (FCs) to care for older adults and reduce the demands made of formal health and social care systems. Under increasing pressure, sustainability of FC's unpaid care work has become a pressing issue. Using qualitative data, this paper explores FCs' care-related work goals, and describes how those goals do, or do not, link to technology. Methods: We employed a sequential mixed-method approach using focus groups followed by an online survey about FCs' goals. We held 10 focus groups and recruited 25 FCs through a mix of convenience and snowball sampling strategies. Carer organizations helped us recruit 599 FCs from across Canada to complete an online survey. Participants' responses to an open-ended question in the survey were included in our qualitative analysis. An inductive approach was employed using qualitative thematic content analysis methods to examine and interpret the resulting data. We used NVIVO 12 software for data analysis. Results: We identified two care quality improvement goals of FCs providing care to older adults: enhancing and safeguarding their caregiving capacity. To enhance their capacity to care, FCs sought: 1) foreknowledge about their care recipients' changing condition, and 2) improved navigation of existing support systems. To safeguard their own wellbeing, and so to preserve their capacity to care, FCs sought to develop coping strategies as well as opportunities for mentorship and socialization. Conclusions: We conclude that a paradigm shift is needed to reframe caregiving from a current deficit frame focused on failures and limitations (burden of care) towards a more empowering frame (sustainability and resiliency). The fact that FCs are seeking strategies to enhance and safeguard their capacities to provide care means they are approaching their unpaid care work from the perspective of resilience. Their goals and technology suggestions imply a shift from understanding care as a source of 'burden' towards a more 'resilient' and 'sustainable' model of caregiving. Our case study findings show that technology can assist in fostering this resiliency but that it may well be limited to the role of an intermediary that connects FCs to information, supports and peers.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

The care capacity goals of family carers and the role of technology in achieving them

et al. 2020

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“…Based on our clinical experiences, the caregiving status of carers is important. In addition, recent research in the area of caregiving emphasized that formal support decreased unmet needs in caregivers of persons with dementia and affected caregiving satisfaction [7]. Therefore, we suggest that evaluating more detailed information about a carer's situation will provide more beneficial results.…”

Section: Dear Editormentioning

confidence: 90%

Response to: “Caring for the person with cancer and the role of digital technology in supporting carers”

Kajiwara

Kako

Miyashita

2019

Support Care Cancer

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“…This theme also can be identified within the SPM/SPM for IWDs as needs may be a mediating factor between objective primary stressors (i.e. behaviors) and various outcomes [46,56]. For the PLST model, identifying the triggers or stressors (or unmet needs) within the environment such as stimulation, activities, or physical discomfort may help alleviate behaviors.…”

Section: Conceptual Modelsmentioning

confidence: 99%

Behaviors of Persons with Dementia: A Review and New Perspective for Future Research

Minyo¹,

Judge²

2020

OBM Geriatrics

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Through the assessment of previous and current literature on the behaviors experienced by persons with dementia, this review discusses the terminology, conceptual models, measurement techniques, and non-pharmacological interventions employed within behavioral research. Additionally, this review considers the illness experience and the need for more research using self-report methodology with persons with dementia in order to address the current gaps within the behaviour literature. With three main objectives, this review paper will address: (1) the literature on behaviors of persons with dementia; (2) the importance of and evidence of the illness experience of persons with dementia; and (3) future research goals and directions.

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The roles of unmet needs and formal support in the caregiving satisfaction and caregiving burden of family caregivers for persons with dementia

Abstract: The level of unmet needs of persons with dementia and their family caregivers must be considered in the development of support programs focused on improving caregiving satisfaction.

Cited by 40 publications

References 30 publications

The care capacity goals of family carers and the role of technology in achieving them

The care capacity goals of family carers and the role of technology in achieving them

Response to: “Caring for the person with cancer and the role of digital technology in supporting carers”

Behaviors of Persons with Dementia: A Review and New Perspective for Future Research

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