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

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-struct ured 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

The use of involuntary treatment among older adults with cognitive impairment receiving nursing care at home: A cross-sectional study

BACKGROUND: Respect for inherent dignity and individual autonomy is a basic principle in health care. However, several studies indicate that care-dependent older adults with a cognitive impairment, receiving nursing care at home, are at risk of care without their consent, referred to as 'involuntary treatment'. This includes the application of physical restraints (e.g. measures to prevent leaving bed or chair), psychotropic drugs (e.g. antidepressants, sedatives) and non-consensual care (e.g. forced hygiene, hiding medication). Research about involuntary treatment is scarce and only recently first studies have been conducted. OBJECTIVE: To investigate 1) the prevalence of involuntary treatment, 2) associated factors and 3) who requests and applies their use among older adults with cognitive impairment receiving nursing care at home. DESIGN: Cross- sectional study. SETTING: Homes of older adults receiving nursing care from district nurses in the eastern part of Belgium. PARTICIPANTS: Data were collected from 1194 randomly selected older adults with cognitive impairments receiving nursing care at home (mean age 83; 67% female). METHOD: District nurses completed an online questionnaire for each selected older adult in their caseload. Involuntary treatment was measured using a questionnaire identifying use of physical restraints, psychotropic medication and non-consensual care. In addition who requests involuntary treatment and who applies it was examined. Older adults sociodemographic characteristics, diagnosis of dementia, activities of daily living (ADL), cognitive status and informal caregiver burden were assessed. RESULTS: Involuntary treatment was used in 52% (95%; CI 49-55) of the total sample. Non-consensual care was most often used (73%; 95% CI 70-77), followed by psychotropic drugs (43%; 95% CI 39-47) and physical restraints (38%; 95% CI 35-42). The use of involuntary treatment was associated with dependency for activities of daily life (OR 1.50; 95% CI 1.33-1.69), cognitive impairment (1.39; 95% CI 1.25-1.55), informal caregiver burden (OR 1.05; 95% CI 1.01-1.10) and aging (OR 0.97; 95% CI 0.95-0.99). Informal caregivers (71%), followed by general practitioners (47%) most frequently requested the use of involuntary treatment, and nurses (81%) mostly applied it. CONCLUSION: In Belgium, involuntary treatment is often used in older adults with a cognitive impairment receiving nursing care at home. The implication of this study for clinical practice is that it confirms the need to develop an approach to prevent and reduce it. Further research is needed to plan and develop such an approach, in order to prevent and reduce the use of involuntary treatment.status: publishe

Mapping the human genetic architecture of COVID-19

The genetic make-up of an individual contributes to the susceptibility and response to viral infection. Although environmental, clinical and social factors have a role in the chance of exposure to SARS-CoV-2 and the severity of COVID-191,2, host genetics may also be important. Identifying host-specific genetic factors may reveal biological mechanisms of therapeutic relevance and clarify causal relationships of modifiable environmental risk factors for SARS-CoV-2 infection and outcomes. We formed a global network of researchers to investigate the role of human genetics in SARS-CoV-2 infection and COVID-19 severity. Here we describe the results of three genome-wide association meta-analyses that consist of up to 49,562 patients with COVID-19 from 46 studies across 19 countries. We report 13 genome-wide significant loci that are associated with SARS-CoV-2 infection or severe manifestations of COVID-19. Several of these loci correspond to previously documented associations to lung or autoimmune and inflammatory diseases3,4,5,6,7. They also represent potentially actionable mechanisms in response to infection. Mendelian randomization analyses support a causal role for smoking and body-mass index for severe COVID-19 although not for type II diabetes. The identification of novel host genetic factors associated with COVID-19 was made possible by the community of human genetics researchers coming together to prioritize the sharing of data, results, resources and analytical frameworks. This working model of international collaboration underscores what is possible for future genetic discoveries in emerging pandemics, or indeed for any complex human disease