Care of family caregivers of persons with dementia (CaFCa) through a tailor-made mobile app: study protocol of a complex intervention study.

BACKGROUND: Globally, family members account for the main source of caregiving of persons with dementia living at home. Providing care to family members with dementia often has negative health consequences for caregivers such as stress, depression and low quality of life. Yet, formal support for family caregivers (FCs) is limited. Telehealth technology has the potential to provide health care and social support to FCs. This study aims to assess the effectiveness of providing support by healthcare professionals (HPs) through a mobile app in reducing stress, depressive symptoms and loneliness, and improving mental health and quality of life of FCs of persons with dementia. METHODS: Using a pragmatic intervention design, this study will use pre- and post-intervention assessment to evaluate the effectiveness of the proposed intervention in a sample of 78 FCs of persons with dementia (PWD). The intervention will be implemented by approximately 5 HPs specialized in dementia care based in the municipalities in Sweden. The main thrust of the intervention is to provide professional support, with help of an interactive mobile app, to family members in their caregiving role for PWDs. Qualitative interviews with HPs and FCs form the groundwork of the development of the mobile app. By using the app on smart phone or tablet, the FC, in groups of 8-10, will communicate with peers and a HP exchanging ideas on how to deal with PWD's behavioral and cognitive changes and get support. They will also be able to discuss stressful events and access mindfulness exercises focused on themselves. Quantitative data will be collected before and at three time points after the 8-week intervention to assess changes in the health outcomes of the FCs. In-depth interviews will be conducted after the intervention to capture the experiences of FCs and HPs regarding the ease of use and acceptability of the app. DISCUSSION: This tailor-made mobile app has the high potential to be a practical platform for supporting FCs to alleviate stress and improve mental health irrespective of distance to the nearest health care or social service center. TRIAL REGISTRATION: ISRCTN, ISRCTN46137262 . Registered 10 October 2019.

Meeting own needs and supporting ability to care: Family caregivers' and health care professionals' perspectives on professional support provided through a potential mobile application.

BACKGROUND: A majority of persons with dementia in Sweden live in their own homes and are often cared for by family members. Caring for a family member may be a positive experience. It may, however, also be a negative experience as symptoms like disturbing behavior and delusions may be difficult to encounter. The burden of being a family caregiver has been shown to affect the caregivers' quality of life. OBJECTIVE: To explore stakeholders' perspectives on a potential mobile application through which family caregivers could be supported by healthcare professionals in caring for a person with dementia living at home. METHOD: Eight individual interviews with family caregivers and a focus group with eight healthcare professionals specialized in dementia care were analyzed using content analysis method. RESULTS: The findings suggest that a mobile application can support family caregivers to meet their own needs in terms of finding structure in everyday life, how to get information and support in their own pace, and how to care for themselves. The findings also suggest the necessity of accessing relevant contact networks to be supported in the ability to care for a family member with dementia. CONCLUSION: Healthcare and social services mediated support provided through user-friendly mobile application has the potential to support family caregivers both in taking care of a person with dementia and caring for themselves. Moreover, it is important that the information provided to family caregivers is personalized according to the needs of the family caregivers as the family member's dementia advances.