Participatory approaches are increasingly required and used in research. In this review, we examined the impact (benefits and disadvantages) of participatory dementia research on researchers as potential key actors to sustainably implement the participatory approach. Our aim was to provide information on how the participatory process could be improved. We conducted a systematic literature review covering the Cochrane Library, PsycNet, PubMed, Scopus, and Google Scholar. The inclusion criteria for publications were as follows: research (1) involving people with dementia as co-researchers, (2) including a description or discussion of the impact of participatory research for researchers, (3) published between 2000 and 2020, and (4) in English. We performed a quality assessment of the included publications. Our final review included nine publications; three categorized as high quality, five as medium quality, and one as low quality. Four of the publications categorized as high or medium quality implemented participation at the level of partnership, and two publications implemented participation at the level of delegated power. The beneficial impact of participatory dementia research on researchers consisted of an increased understanding of people with dementia that widened researchers’ theoretical knowledge and perspectives and increased their competence in working with people with dementia. Disadvantages comprised the required additional effort and time as well as the difficulty of establishing a balanced relationship between researchers and co-researchers. Disadvantages may result from the lack of a definition and structure of participatory research and a lack of training on both sides. More well-designed and transparent methods of evaluating participatory research projects are needed.

Background: To prepare nursing students optimally for their future daily working life as formal caregivers of people with age-related diseases such as dementia, the needs of this target group must be identified. We explored the needs of people with dementia based on Maslow's need hierarchy theory to systematically identify requirements of nursing professionals as part of the project Digital Training of Nursing and Health Management (DigiCare). Method:We conducted semi-structured interviews with people with dementia (n = 10) and caregivers of people with dementia (n = 32). We asked for their daily routines, favoured living spaces, leisure activities and experience of care. We analysed the data with qualitative content analysis according to Mayring. Categories were formed deductively based on the need levels defined by Maslow. Results:The survey showed that the deficiency needs (physiological needs, safety and security, love and belonging) were mostly met in people with dementia, although some respondents described that social needs were not sufficiently met. People with dementia felt loneliness caused by the loss of social contacts due to disease symptoms such as language impairment. The respondents made very ambivalent statements regarding growth needs (esteem, and self-actualization) of people with dementia. Some people with dementia and their relatives dealt openly with the disease, others described the stigmatisation of dementia and the resulting social rejection of those affected by the disease. Dementia, but also old age in general, was a barrier to cover the need of self-actualization. The majority of people with dementia we interviewed showed little willingness to accept external help and preferred a high degree of independence. Maintaining good health was mentioned as the most important wish for the future. The identification of further wishes was challenging, as the majority of respondents wanted to continue with their usual life without any changes. Conclusion:Our survey suggests that people with dementia need support in particular to cover the needs for belonging, esteem, and self-actualization. The systematic identification of needs carried out in this study can help to inform formal caregivers to deliver demand-oriented and person-centred care.

Background: Digitalization is key to face socio-demographic change accompanied by an increasing care demand of people with dementia and a shortage of skilled healthcare workers. The project Digital Training of Nursing and Health Management (DigiCare)aims to involve people affected by dementia in the development of digital teaching formats that meet the needs of all stakeholders in dementia care. Here, we explored the needs of nursing students which already have practical experience in dementia care to identify gaps in the existing curricula and subjective improvement suggestions.