Maud Hevink

| 78 Introduction Dementia is a progressive disease and consequently, people become increasingly dependent on support and care of others. Recent literature emphasizes the need for high-quality care for people with dementia and their informal caregivers as a means of maintaining or increasing quality of life and promoting the concept of living well with dementia (1, 2). This is in line with the World Health Organization’s global action plan on dementia, which states people should receive care aligned with their wishes and preferences (3). Post-diagnostic support is defined as a system of holistic, integrated continuing care in the context of declining function and increasing needs of informal caregivers (4). It is an important means to live well with dementia and covers a broad range of services and information that help people with dementia and informal caregivers, both immediately after diagnosis and going forward. Ideally, support is tailored, ongoing, and flexibly adapts to the changing needs as dementia progresses (5). According to the National Health Service in the United Kingdom (UK), a goal of early support is providing information and support to access formal support soon after diagnosis (6). Support soon after diagnosis is important, as informal caregivers who receive it will cope better over time compared to those that do not (7). Early support can potentially increase people with dementia and informal caregivers’ confidence in identifying and accessing community support (8). However, as highlighted by the informal caregiver need paradox, when caregivers had little acceptance of their role as informal caregiver, they are not open to early support (9). At the same time, informal caregivers retrospectively consider that early support tailored to personal needs would have been helpful in accepting dementia, thus highlighting its importance. Despite its’ importance, support often fails to adequately meet the needs of people with dementia and informal caregivers (10, 11). People with dementia report several unmet needs, including sufficient daytime activities, support to address psychological distress and physical health issues (12-14). Additionally, they lack information on dementia and feel emotionally overwhelmed (15). Informal caregivers also reported a variety of needs including support to help them accept and adapt to their caregiving role (16). Unsurprisingly, informal caregivers need support to maintain their own well-being (12). People with dementia and informal caregivers prioritize different aspects of support. People with dementia prioritize support that maintains or improves quality of life,

RkJQdWJsaXNoZXIy MTk4NDMw