Involuntary treatment in dementia care at home: Results from the Netherlands and Belgium.

AIMS AND OBJECTIVES: To gain insight into the request, use and associated factors of involuntary treatment in people with dementia (PwD) receiving professional home care in the Netherlands and Belgium. BACKGROUND: Most of the PwD remain living at home as long as possible. Due to complex care needs, this can result in an increased risk for care provided against the wishes of the client and/or to which the client resists, referred to as involuntary treatment. DESIGN: Secondary data analyses of two cross-sectional surveys. METHODS: Dementia case managers and district nurses filled in a questionnaire for each PwD in their caseload. This study included data of 627 PwD receiving professional home care in the Netherlands and 217 in Belgium. The same methodology (questionnaire and variables) was used in both samples. Descriptive statistics and multi-level logistic regression analyses were used to analyse the data. The study adhered to the STROBE checklist. RESULTS: More than half of the PwD (50.7%) living at home received involuntary treatment (Belgium 68.2% and the Netherlands 44.7%). Nonconsensual care (82.7%) was the most common, followed by psychotropic medication (40.7%) and physical restraints (18.5%). Involuntary treatment use was associated with living alone, greater ADL dependency, lower cognitive ability, higher family caregiver burden and receiving home care in Belgium versus the Netherlands. Involuntary treatment was most often requested by family caregivers. CONCLUSIONS: Involuntary treatment is often used in PwD, which is in line with previous findings indicating dementia as a risk factor for involuntary treatment use. More research is needed to gain insight into variations in prevalence across other countries, which factors influence these differences and what countries can learn from each other regarding prevention of involuntary treatment. RELEVANCE TO CLINICAL PRACTICE: To provide person-centred care, it is important to study ways to prevent involuntary treatment in PwD and to stimulate dialogue between professional and family caregivers for alternative interventions.

A Quasi-experimental study on prevention and reduction of involuntary treatment at home (PRITAH) in people with dementia.

AIM AND OBJECTIVES: To examine the implementation (reach, dose, fidelity, adaptations, satisfaction), mechanisms of impact (attitude, subjective norm, perceived behavioural control and intention) and context of the PRITAH intervention. BACKGROUND: Involuntary treatment, defined as care provided against one's will, is highly prevalent in home care. The PRITAH intervention comprises policy, workshops, coaching and alternative measures for professional caregivers to prevent and reduce involuntary treatment in home care. DESIGN: Quasi-experimental study. METHODS: Eight home care teams from two care organisations participated in this study. Guided by the Theory of Planned Behavior, the mechanisms of impact were evaluated with questionnaires. Implementation and context were assessed using attendance lists, evaluation questionnaires, focus groups and logbooks. The study adhered to the TREND checklist. RESULTS: 124 of 133 eligible professional caregivers participated (93%). All four components were delivered with minor deviations from protocol. Participants' subjective norms and perceived behavioural control changed over time in favour of the intervention group. No effects were seen for attitude and intention. Barriers included an unclear policy and lack of communication between stakeholders. The multidisciplinary approach and possibility to discuss involuntary treatment with the specialised nurse were described as facilitators. CONCLUSIONS: Prevention and reduction of involuntary treatment at home is feasible in home care practice and contributes to changing professional caregivers' subjective norms and perceived behavioural control, prerequisites for behavioural change in order to prevent and reduce involuntary treatment. A follow-up study on the effectiveness of PRITAH on actual use, prevention and reduction of involuntary treatment in home care is needed. Future studies should emphasise the role of family caregivers and GPs and actively involve them in the prevention and reduction of involuntary treatment. RELEVANCE TO CLINICAL PRACTICE: Involuntary treatment is commonly used in dementia home care and professional and family caregivers need to be supported in prevention and reduction of involuntary treatment in people with dementia.

Prevention and reduction of involuntary treatment at home: A feasibility study of the PRITAH intervention.

Sometimes care is provided to a cognitively impaired person against the person's will, referred to as involuntary treatment. We developed the PRITAH intervention, aimed at prevention and reduction of involuntary treatment at home. PRITAH consists of a policy discouraging involuntary treatment, workshops, coaching by a specialized nurse and alternative interventions. A feasibility study was conducted including 30 professional caregivers. Feasibility was assessed by attendance lists (reach), a logbook (dose delivered and fidelity), evaluation questionnaires and focus group interviews (dose received, satisfaction & barriers). The workshops and coach were positively evaluated and the average attendance rate was 73%. Participants gained more awareness and knowledge and received practical tips and advice to prevent involuntary treatment. Implementation of the intervention was feasible with minor deviations from protocol. Recommendations for improvement included more emphasis on involvement of family caregivers and general practitioners and development of an extensive guideline to comply with the policy.

Professional and family caregivers' attitudes towards involuntary treatment in community-dwelling people with dementia.

AIMS: The aim of this study was to gain insight into professional and family caregivers' attitudes towards involuntary treatment in community-dwelling people with dementia (PwD). BACKGROUND: The number of PwD with complex care needs living at home is increasing rapidly. In some situations, caregivers provide care against the will of PwD, referred to as involuntary treatment, which includes non-consensual care, psychotropic medication and physical restraints. DESIGN: A cross-sectional study. METHODS: A total of 228 professional (nursing staff, general practitioners (GPs) and other healthcare professionals such as physical therapists and psychologists) and 77 family caregivers of PwD completed the Maastricht Attitude Questionnaire-Home Care. This questionnaire measures attitudes towards involuntary treatment and perceived restrictiveness of and experienced discomfort in using involuntary treatment. Data were collected in the Netherlands between June and November 2016. RESULTS: Family caregivers and GPs had more positive attitudes towards involuntary treatment than nursing staff and other healthcare professionals, indicating that they are more accepting of involuntary treatment. A more positive attitude was associated with higher perceived caregiver burden and being a family caregiver. Family caregivers and GPs found the use of involuntary treatment less restrictive and indicated feeling more comfortable when using these measures. CONCLUSION: It is important to account for the differences in attitudes and foster dialogue among professional and family caregivers to find common ground about alternatives to involuntary treatment. These results will inform the development of an intervention that aims to prevent involuntary treatment in home care.