| 207 8 dementia. Chapters 3, 4 and 6 were used to identify relevant topics to address in the information (such as the emotional aspect of coming to terms and the need to support informal caregivers to seek support). A co-design process with people with dementia and informal caregivers was conducted that led to the development of the informational website called ‘Forward with Dementia’ (www.forwardwithdementia.org) (48, 49). There is no universal definition of the concept of co-design (50). In our study co-design was shaped in two ways. First, a full member of the research team had dementia and was able to provide the lived experience throughout the research process. Second, during the design and development phase of the website, 20 interactive sessions (four rounds in five countries) were held with people with dementia and informal caregivers that guided decisions on format (online), name, branding, content and user-testing. Preliminary evidence suggests that it is a useful resource for people with dementia and informal caregivers (51). Next to web-based support, people with dementia and informal caregivers often seek information from their health and social care professionals (52-54). Healthcare professionals tend to value communication as an important tool to help people with dementia as identified in Chapter 3. Effective communication strategies from healthcare professionals can improve the health outcomes of patients (55). For healthcare professionals, it might be challenging to provide the right amount of information at the right time to meet the needs of people with dementia and informal caregivers. In Chapters 6 and 7 we identified that people with dementia and informal caregivers felt that the communication skills of healthcare professionals are sometimes lacking resulting in decreased satisfaction with the quality of care provided. People with dementia and informal caregivers often critique healthcare professionals for not providing them with enough or the right type of information (56). From a healthcare professional perspective, communicating with a person with dementia with cognitive deficits might be challenging, as it requires not only verbal communication skills but also emphasizes the need for non-verbal communication and adjusting the pace of information provision to the capabilities of the person with dementia (57). From a healthcare professional’s perspective, communication is an important tool for providing information and allows them to provide person-centered care. Person-centered care is defined as a continuous process in which an individual’s values and preferences are elicited and, once expressed, guide all aspects of their health care, supporting their realistic health and life goals (58).
RkJQdWJsaXNoZXIy MTk4NDMw