Abstract
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.
Highlights
Worldwide, dementia has a profound health impact on those who have it and on their caregivers as well
The number of persons living with dementia (PLWD) worldwide will triple from 35.6 million to 115.4 million by 2050.1 The majority of PLWD age in place, and wish to live there as long as possible, making family caregiving a major portion of dementia care provision.[1,2]
This study aims to identify and describe family caregivers’ experiences regarding care decisions concerning situations that can lead to involuntary treatment use in PLWD at home
Summary
Dementia has a profound health impact on those who have it and on their caregivers as well. 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. 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. Findings: Family caregivers experience the decision-making process concerning care dilemmas that can lead to involuntary treatment as complicated, stressful and exhausting. They consider safety and autonomy as important values, they struggle with finding the right balance between them.
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