Family caregivers and decision-making for older people with dementia

Giertz, Lottie; Emilsson, Ulla Melin; Vingare, Emme-Li

doi:10.1080/09649069.2019.1627087

Cited by 13 publications

(11 citation statements)

References 36 publications

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“…13 However, family caregivers may find it essential to take safety measures [7][8][9] that may lead to situations to which PLWD resist. 14 Family caregivers do not always have sufficient skills, knowledge or support to respond to care for resistance [15][16][17] in a manner that is aligned with a PCC approach. 13 Several terms are used in the literature to describe care to which PLWD resist or do not provide consent for, such as coercive care, 17 restiveness to care 18 and involuntary treatment.…”

Section: Introductionmentioning

confidence: 99%

Caregiver decision-making concerning involuntary treatment in dementia care at home

Moermans

Mengelers²,

Bleijlevens³

et al. 2021

Nurs Ethics

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Background: Dementia care at home often involves decisions in which the caregiver must weigh safety concerns with respect for autonomy. These dilemmas can lead to situations where caregivers provide care against the will of persons living with dementia, referred to as involuntary treatment. To prevent this, insight is needed into how family caregivers of persons living with dementia deal with care situations that can lead to involuntary treatment. Objective: To identify and describe family caregivers’ experiences regarding care decisions for situations that can lead to involuntary treatment use in persons living with dementia at home. Research design: A qualitative descriptive interview design. Data were analysed using the Qualitative Analysis Guide of Leuven. Participants and research context: A total of 10 family caregivers providing care for 13 persons living with dementia participated in in-depth semi-structured interviews. Participants were recruited by registered nurses via purposive sampling. Ethical consideration: The study protocol was approved by the Ethics Committee of the University Hospitals Leuven and the Medical Ethical Test Committee Zuyderland. Findings: Family caregivers experience the decision-making process concerning care dilemmas that can lead to involuntary treatment as complicated, stressful and exhausting. Although they consider safety and autonomy as important values, they struggle with finding the right balance between them. Due to the progressive and unpredictable nature of dementia, they are constantly seeking solutions while they adapt to new situations. Family caregivers feel responsible and experience social pressure for the safety of persons living with dementia. They may be blamed if something adverse happens to the persons living with dementia, which increases an already stressful situation. Their experience is influenced by characteristics of the care triad (persons living with dementia, professional and family caregivers) such as practical and emotional support, knowledge, and previous experiences. Discussion and conclusion: To prevent involuntary treatment, professionals need to proactively inform family caregivers, and they need to support each other in dealing with complex care situations.

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Section: Introductionmentioning

confidence: 99%

Caregiver decision-making concerning involuntary treatment in dementia care at home

Moermans

Mengelers²,

Bleijlevens³

et al. 2021

Nurs Ethics

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“…When a neurodegenerative disease becomes severe, a person's capacity for self-care decreases due to difficulties with memory, processing information, and communication skills. The person's ability to manage a home, food and personal hygiene decreases; at the same time, the person often becomes resistant to receiving care from others (Arias 2013;Doron 2014;Giertz, Melin Emilsson, and Vingare 2019).…”

Section: Previous Research On Self-neglectmentioning

confidence: 99%

“…Self-neglect is defined as the inability to care for oneself in combination with resisting receiving care from others, where resistance can be expressed verbally and non-verbally, physically and emotionally, actively and passively (Harding and Taşcıoğlu 2018;Ryrstedt 2014). This condition is common among older people with dementia, and it is associated with increased health risks (Doron, Band-Winterstein, and Naim 2013;Dong 2017), increased pressure on relatives or other caregivers (Bremer et al 2015;Giertz, Melin Emilsson, and Vingare 2019; May-Chahal and Antrobus 2012), and increased challenges for professionals, including social workers (Doron, Band-Winterstein, and Naim 2013;Lundberg 2018;McDermott 2011).…”

Section: Previous Research On Self-neglectmentioning

confidence: 99%

“…Self-neglect is defined as an inability to care for oneself combined with resistance to receiving care from others (Doron, Band-Winterstein, and Naim 2013). This identified ethical problem for welfare professionals is common among older persons with dementia, a diagnosis that is increasingly common in countries with ageing populations (Doron 2014;Giertz, Melin Emilsson, and Vingare 2019), which has subsequently led to further study of the causes, experiences, and implications of self-neglect. However, how policies regarding self-neglect guide the professionals who are called upon to solve this problem has so far received little research attention (Doron, Band-Winterstein, and Naim 2013).…”

Section: Introductionmentioning

confidence: 99%

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Care Ethics for Supported Decision-making. A Narrative Policy Analysis Regarding Social Work in Cases of Dementia and Self-neglect

Thelin

2021

Ethics and Social Welfare

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“…The services should be formed in collaboration with the service recipient; however, this may be a dilemma for people with impaired decision-making ability. There is legal regulation concerning legal guardianship for adults, the most common support is a formally appointed legal guardian (Giertz et al, 2019). However, their support is not covered by the SSA although they may file complaints.…”

Section: Introductionmentioning

confidence: 99%

Adult safeguarding in Sweden’s social services

Kjellberg

2020

JAP

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Purpose The purpose of this paper is twofold: firstly, to describe adult safeguarding in Sweden’s social services, and secondly, to analyse the changes in Sweden’s national policies related to its adult safeguarding legislation and discuss the implications. Design/methodology/approach An analysis of two government bills was carried out inspired by the What’s the Problem Represented to Be approach. Findings The background and review procedure that is part of the obligation to report mistreatment in Sweden’s social services is described. The policy analysis shows a change from a rights-based discourse concerning the duty of staff to safeguard vulnerable service recipients’ rights, to a discourse on the obligation for staff to be part of systematic quality assurance. The most conspicuous change in the representation of the problem was attaching the problem descriptions to a lack of quality instead of a duty to protect. Social implications The implications of the reporting procedure are discussed in terms of a general lack of channels for service recipients and their family members to raise their own concerns about mistreatment. It is suggested that there ought to be more legal and transparent channels for service recipients and their family members to file complaints. Originality/value This paper provides an overview of adult safeguarding in Sweden’s social services, which to date has been lacking in the literature.

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Family caregivers and decision-making for older people with dementia

Cited by 13 publications

References 36 publications

Caregiver decision-making concerning involuntary treatment in dementia care at home

Caregiver decision-making concerning involuntary treatment in dementia care at home

Care Ethics for Supported Decision-making. A Narrative Policy Analysis Regarding Social Work in Cases of Dementia and Self-neglect

Adult safeguarding in Sweden’s social services

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