PP-2 Caring for the carers: needs of family caregivers of people with advanced dementia

<h3>Introduction</h3> Caring for people with dementia poses significant challenges for their family caregivers, whose needs can change throughout the disease progression. Limited knowledge is available for family caregiver needs in residential settings and very late stages of dementia. <h3>Aims</h3> To explore the self-perceived needs of family caregivers that care for people with advanced dementia (PwAD) regardless of the context of care. <h3>Methods</h3> A descriptive qualitative study with inductive content analysis was performed. Semi-structured interviews were conducted from April to September 2023 with 13 family caregivers who actively participated in the care of their relative in the nursing home or at home. <h3>Results</h3> Eleven categories that described the information and supportive needs of family caregivers of PwAD were identified. Information needs refer to clinical information about the disease trajectory and treatment options at the end of life, and information regarding legal or bureaucratic issues including the role of family caregivers in the decision-making process, how becoming a legal guardian or accessing State assistance and benefits. Supportive needs were related to psychological support, having a person of reference who accommodates their concerns and anxiety and facilitates the information process, making time to take care of themselves, and support in daily care duties when caring for the relative at home. <h3>Conclusion</h3> In late-stage dementia, similarly to early- and middle-stage, family caregivers report several unmet needs (of information, material, emotional, and psychosocial). This implies the need for support even when the relative is in a nursing home. <h3>Impact</h3> The recurrence of well-known needs suggests that it is time to start moving from needs assessment to interventions. Optimising the use of resources that are already available is the first step in addressing the needs of dementia family caregivers. However, this may not be enough and investments in additional resources or strategies may be required.