Background This systematic review aimed to explore the process of decision-making for nutrition and hydration for people living with dementia from the perspectives and experiences of all involved. Methods We searched CINAHL, the Cochrane Library, EMBASE, MEDLINE and PsycINFO databases. Search terms were related to dementia, decision-making, nutrition and hydration. Qualitative, quantitative and case studies that focused on decision-making about nutrition and hydration for people living with dementia were included. The CASP and Murad tools were used to appraise the quality of included studies. Data extraction was guided by the Interprofessional Shared Decision Making (IP-SDM) model. We conducted a narrative synthesis using thematic analysis. PROSPERO registration number CRD42019131497. Results Forty-five studies were included (20 qualitative, 15 quantitative and 10 case studies), comprising data from 17 countries and 6020 patients, family caregivers and practitioners. The studies covered a range of decisions from managing oral feeding to the use of tube feeding. We found that decisions about nutrition and hydration for people living with dementia were generally too complex to be mapped onto the precise linear steps of the existing decision-making model. Decision-making processes around feeding for people living with dementia were largely influenced by medical evidence, personal values, cultures and organizational routine. Although the process involved multiple people, family caregivers and non-physician practitioners were often excluded in making a final decision. Upon disagreement, nutrition interventions were sometimes delivered with conflicting feelings concealed by family caregivers or practitioners. Most conflicts and negative feelings were resolved by good relationship, honest communication, multidisciplinary team meetings and renegotiation. Conclusions The decision-making process regarding nutrition and hydration for people living with dementia does not follow a linear process. It needs an informed, value-sensitive, and collaborative process. However, it often characterized by unclear procedures and with a lack of support. Decisional support is needed and should be approached in a shared and stepwise manner.

Background Expressive writing involves writing about stressful or traumatic experiences. Despite trials in people with advanced disease, no systematic review to date has critiqued the evidence on expressive writing in this population. To synthesise the evidence of the effects of expressive writing on pain, sleep, depression and anxiety in people with advanced disease. Methods A systematic review according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. CINAHL, CENTRAL, PsycINFO and PubMed were searched from January 1986 to March 2018. Other sources included clinical data registers and conference proceedings. Studies were included if they were randomised controlled trials that assessed the impact of an intervention involving expressive writing for adults with advanced disease and/or studies involving linguistic analysis on the expressive writing output. Methodological quality was assessed using the Cochrane risk of bias tool and the Mixed Methods Appraisal Tool. The Grading of Recommendations Assessment, Development and Evaluation tool was used to assess the level of evidence for the outcomes of interest. The protocol of this systematic review has been registered on PROSPERO (CRD42017058193). Results Six eligible studies with a total of 288 participants were identified, including four randomised controlled trials. All of the trials were in cancer and recruited predominantly women. None of the interventions were tailored to the population. Studies had methodological shortcomings and evidence was generally of low quality. Combined analysis of the four trials, involving 214 participants in total, showed no clear difference in the effect of expressive writing on sleep, anxiety or depression compared to an active control. Pain was not evaluated in the trials. In contrast, analysis of the four studies that included linguistic analysis alluded to linguistic mechanisms for potential effects. Conclusion Although the trial results suggest there is no benefit in expressive writing for people with advanced disease, the current evidence is limited. There is a need for more rigorous trials. It would be of benefit first to undertake exploratory research in trial design including how best to measure impact and in tailoring of the intervention to address the specific needs of people with advanced disease. Trial registration The protocol of this systematic review has been registered on PROSPERO, which can be accessed here (registration number: CRD42017058193 ). Electronic supplementary material The online version of this article (10.1186/s12904-019-0449-y) contains supplementary material, which is available to authorized users.

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