| 161 6 Navigating complex healthcare systems Caregivers expressed negative experiences with navigating formal support systems. They perceived support as difficult to access, or even absent. Australian, Canadian and Polish caregivers highlighted financial regulations regarding support as difficult to navigate and identified a need for care coordination. Dutch caregivers had access to case managers and had mixed experiences navigating healthcare systems. ‘it’s the disparate, disjointed, all over-the-place, quote- unquote ‘support services’ for both patient and carer. That is what stand out for me’. (Australian caregiver) Feeling left on your own People with dementia in Australia, the Netherlands and Poland and caregivers in all countries reported feeling left alone when it came to formal support. They felt they had little knowledge and awareness of support services and felt abandoned by the healthcare system and healthcare professionals. In some cases, this feeling of abandonment by healthcare professionals stemmed from experiences in the diagnostic trajectory whereby Dutch and Canadian people with dementia felt information was withheld and Australian, Canadian and Dutch caregivers felt their concerns were not taken seriously. Australian and Canadian caregivers expected healthcare professionals to provide enough information and guide them through the healthcare system. However, this expectation often remained unmet, and they felt healthcare providers often lacked empathy instead. Caregivers and people with dementia differed in their experience and response to the perceived lack of information. Whilst a care plan was mentioned as a possible solution, only a few reported positive experiences with such plan. Australian caregivers adopted a proactive approach and actively went out searching for information. As a result of the complex healthcare systems, navigating it was stressful for caregivers and led to frustration and uncertainty for Australian people with dementia and Canadian and Dutch caregivers. ‘What can be done now, can something be done? What is the proper help? What offer of help? Are there drugs for this? Will it progress?’ (Polish person with dementia)
RkJQdWJsaXNoZXIy MTk4NDMw