Aims and objectives To explore the perspectives of people with dementia on being cared for by others, on the future and on the end of life, and to evaluate the capability and willingness of... Show moreAims and objectives To explore the perspectives of people with dementia on being cared for by others, on the future and on the end of life, and to evaluate the capability and willingness of participants to have these conversations.Background Awareness about perspectives of people with dementia should decrease stigmatisation and improve their quality of life. Applying palliative care principles from an early stage is important to address diverse needs and to anticipate the future. Few studies investigate perspectives of people with dementia regarding palliative care, including advance care planning.Design Qualitative descriptive design.Methods We performed in-depth interviews with 18 community-dwelling persons with dementia in South-Limburg, the Netherlands. Transcripts were analysed using an inductive content analysis. Two authors coded the data and regularly compared coding. All authors discussed abstraction into categories and themes. We followed the COREQ reporting guidelines.Results Five overarching themes derived from the interviews were as follows: (a) My life still has value and meaning, (b) I am my own unique individual, (c) I place my trust in other people, (d) The future worries me, and (e) I accept and embrace what life brings.Conclusions Participants' thoughts about the future and the end of life involved feelings of ambiguity and anxiety, but also of contentment and resignation. Despite worrying thoughts of decline, participants primarily demonstrated resilience and acceptance. They expressed appreciation and trust towards those who care for them. They wished to be recognised as unique and worthy humans, until the end of life.Relevance to clinical practice This study demonstrates capability and willingness of people with dementia to discuss the future and end-of-life topics. Public and professional awareness may facilitate opportunities for informal end-of-life discussions. Healthcare professionals should promote belongingness of persons with dementia and strive to build equal, trustful care relationships with them and their families. Show less
Velde-van Buuringen, M. van der; Achterberg, W.P.; Caljouw, M.A.A. 2020
Aim: To evaluate the process of daily going outside in a nursing home garden and explore the effect of garden use on quality of life and neuropsychiatric symptoms in persons with dementia.Design: A... Show moreAim: To evaluate the process of daily going outside in a nursing home garden and explore the effect of garden use on quality of life and neuropsychiatric symptoms in persons with dementia.Design: A feasibility study with quantitative and qualitative approaches.Methods: Twenty residents with a diagnosis of moderate-to-severe dementia participated. The intervention consisted of at least 30 min of garden use, whereby any activity outside is possible as long as it is person-centred and fitting within usual daily nursing home practice. Interviews were held with caregivers, and questionnaires were sent to other disciplines involved. Quality of life (QUALIDEM) and neuropsychiatric symptoms (NPI-NH) were collected at baseline, intervention and postintervention.Results: Caregivers experienced and observed benefits of going outside for themselves, in residents and relatives. Incorporating daily garden use does not imply an additional task, but rather rearranging priorities and doing the usual activities outside a part of the time. Show less
Kaasalainen, S.; Hunter, P.V.; Hill, C.; Moss, R.; Kim, J.; Steen, J.T. van der; ... ; Hadjistavropoulos, T. 2019
