| 165 6 caregivers tend to prepare for the future (36, 64). Caregivers may put a stronger emphasis on formal support because often they are the ones tasked with navigating the formal support system, feel responsible for their loved one with dementia and need formal support to ease some of their burden (65). The mismatch between the supply and demand of support from friends and family may hinder caregiver’s use of support from the social network (66). People with dementia and caregivers differ in the type of decisions to prepare to live well with dementia as they might hold different priorities, with caregivers focussing on avoiding harm to their loved one whilst people with dementia want to stay active and independent without feeling like a burden (67). Like Clare and Wu (68) we observed that physical fitness and health are important for people with dementia and contribute to living well with dementia. Although exploring differences in how people with dementia and caregivers live with dementia was not the primary aim of our study, it is still a relevant finding that should be further explored. Strengths & weaknesses The projective techniques in our study allowed people to tell their stories about support and living with dementia. This technique is a relatively new approach to data collection data and is deemed comprehensible and manageable for people with dementia. It can reveal a broader view of support than the more traditional qualitative approach might have obtained (40). A convenience sample was obtained and sample sizes across countries were small, making data saturation at the country level unlikely and limiting transferability. Additionally, our results could be biased by differences in recruitment methods and participants’ characteristics. Polish researcher fieldnotes highlighted their sample likely included people who had support due to their recruitment methods, and that many people are still unlikely to receive support and these perspectives may not have been captured in the data. Australian researcher fieldnotes identified that in recruiting participants, those who had strong (and negative) experiences were more keen to participate, and they included a large proportion of younger people with dementia (<65 years old), who tend to have different care needs. Within the interpretation of the cross-country results, it should be noted that we only had small samples across countries and did not reach data saturation. We
RkJQdWJsaXNoZXIy MTk4NDMw