BackgroundSelf-management is important for family caregivers of people with dementia, especially when they face changes in their relative’s behavior and mood, such as depression, apathy, anxiety, agitation and aggression. The aim of this study is to give insight into why these changes in behavior and mood are stressful for family caregivers, what self-management strategies family caregivers use when managing these changes and the stress they experience.MethodsA qualitative study was conducted using four online focus groups with 32 family caregivers of people with dementia living in the Netherlands. Transcripts of the focus group discussions were analyzed using principles of thematic analysis.ResultsManaging changes in the behavior and mood of their relative with dementia is stressful for family caregivers because of constantly having to switch, continuously having to keep the person with dementia occupied and distracted, the fact that others see a different side to the relative, and the fact that caregivers know what to do, but are often not able to put this into practice. Caregivers use calming down and stimulation as self-management strategies for influencing the changes in the behavior and mood of their relative. Furthermore, caregivers describe three self-management strategies that let them manage their own stress and keep up the care for their loved ones: looking for distractions, getting rest, and discussing their feelings and experiences.ConclusionsBehavior and mood changes of a person with dementia are stressful for family caregivers. They use several self-management strategies to positively affect the mood and behavior changes, and also to manage their own stress.Electronic supplementary materialThe online version of this article (doi:10.1186/s12877-016-0268-4) contains supplementary material, which is available to authorized users.

Background Self-management in patients and family caregivers confronted with dementia is not self-evident. Self-management skills may be limited because of the progressive cognitive decline of the patient and because family caregivers are often also very aged. Self-management support by nursing staff is therefore of paramount importance. Objectives To gain insight into how nursing staff perceive their self-management support tasks, and how they put them into practice. Research questions are: 'What are the opinions and experiences of Dutch nursing staff working in home care or residential elderly care regarding self-management support for people with dementia and their family caregivers?' and 'Do nursing staff feel sufficiently trained and skilled for self-management support?'. Methods A mixed methods approach was used, combining cross-sectional quantitative survey data from 206 Dutch nursing professionals with qualitative interviews among 12 nursing staff working in home care or residential elderly care in The Netherlands. Results Nursing staff working in home care experienced self-management support of people with dementia as a part of their job and as an attractive task. They consider 'helping people with dementia to maintain control over their lives by involving them in decisions in daily care' the essence of self-management support. Nursing staff saw family caregivers as their main partners in providing self-management support to the patient. They were less aware that family caregivers themselves might also need self-management support. Nursing staff often felt insufficiently trained to give adequate self-management support. RN's and CNA's did not differ in their opinions, experiences and training needs. Conclusions Nursing staff in home care do consider self-management support an important and attractive task in dementia care. Their skills for providing self-management support to patients with dementia and family caregivers need improvement. Recommendations Nursing staff need sufficient training to enable the proper provision of self-management support for people with dementia. More attention should also be given to the support of self-management for family caregivers.

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Challenging behaviour is common in people with dementia at home. Nurses guide people with dementia and their informal caregivers managing challenging behaviour. However, common nursing guidelines for challenging behaviour in home care are unsuitable to the situation of migrants with dementia. We started a co-creation project with home care nurses, dementia case managers, informal caregivers of migrant background and student nurses as co-researchers that aims to develop an appropriate guideline. Semi-structured interviews at the start explored the current experiences with challenging behaviour. Interview results informed several working sessions where we discussed the results and used creative working methods such as role play to develop a first prototype of the guideline. The prototype was implemented in the daily practice of six home care teams and followed up during reflection meetings with our co-researchers. Our guideline puts special attention to getting familiar with each other before taking steps in managing challenging behaviour.