| 212 that despite differences in healthcare systems, the experiences of caregivers and people with dementia were rather similar. Although experiences and needs might be rather similar, interventions and solutions addressing unmet needs and their implementation across countries might be different to fit in with social resources and cultural expectations (97). Conducting cross-country research can be challenging, due to several factors (98). For example, in the cognisance consortium, it was challenging to plan meetings across three continents and four different time zones. In addition, internal research collaborations may be faced with subtle language differences where words have slightly different meanings (for example, there is no acceptable word for Dementia in Poland as it is a highly stigmatized term). Strengthening the position of people with dementia in research Much research on people with dementia has been done through proxy reports by informal caregivers and healthcare professionals. It has been demonstrated that there are considerable differences in proxy and patient reporting on health and quality of life (99, 100). Based on the findings of Chapters 4 and 6 it is important to include the voice of people with dementia as their experience and their needs might radically differ from those of informal caregivers (who are frequent proxy reporters). It provides more in-depth insight that is needed to better meet their needs and support them to live well with dementia. However, including people with dementia in research has been perceived as challenging due to ethical concerns about decision-making and limited cognitive capacity to engage in research (101). Research has identified several facilitators around including people with dementia such as the use of respectful language surrounding dementia and the researchers’ ability to deal with potential participant distress (102). In recent years, more and more research has undertaken the effort to actively include the voices of people with dementia as participants in research (103, 104). To aid the development of this movement it is also important to consider how we can make the research experience more friendly towards people with dementia. In qualitative research, this might include a more creative approach with regard to the methods chosen. Whilst there are numerous traditional methods available such as interviews, focus groups and observations, there
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