Abstract
Background: Younger onset dementia (YOD) is an unexpected diagnosis for people under 65 years, which has far reaching consequences on the individual and their family, including children. Recent research has highlighted social exclusion and discriminatory practices towards people living with YOD and family members, impacting interactions and relationships within the family unit, and with existing services and supports.
Methods: Thirty-five data capture events were gained through semi structured interviews with children and young people (17), people living with YOD (5), spouse/caregivers (6) and health and social care providers (7). A thematic analysis was conducted using an innovative theoretical lens drawn from the combined perspectives of the social model of disability and family systems-illness model.
Results: Two main themes emerged in the data: Understanding the social demands on the family which include lifecycle challenges and pressures within a social and family context; and interactions of health and social care providers with families living with younger onset dementia highlighting the opportunities and challenges in providing support and services geared to a whole family approach.
Conclusion: In order to provide families living with YOD with the optimal assistance and support, the co-creation of a family-focused service model is proposed. This socially orientated model could provide a valuable foundation that underpins effective interactions, and informs service and policy development between service users, service providers and other stakeholders. This innovative model focuses on actions that foster enablement of the whole family to function well as disease progresses.
Methods: Thirty-five data capture events were gained through semi structured interviews with children and young people (17), people living with YOD (5), spouse/caregivers (6) and health and social care providers (7). A thematic analysis was conducted using an innovative theoretical lens drawn from the combined perspectives of the social model of disability and family systems-illness model.
Results: Two main themes emerged in the data: Understanding the social demands on the family which include lifecycle challenges and pressures within a social and family context; and interactions of health and social care providers with families living with younger onset dementia highlighting the opportunities and challenges in providing support and services geared to a whole family approach.
Conclusion: In order to provide families living with YOD with the optimal assistance and support, the co-creation of a family-focused service model is proposed. This socially orientated model could provide a valuable foundation that underpins effective interactions, and informs service and policy development between service users, service providers and other stakeholders. This innovative model focuses on actions that foster enablement of the whole family to function well as disease progresses.
| Original language | English |
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| Publication status | Published - 2021 |
| Event | Australian Institute of Family Studies (AIFS) snack sized research showcase - Duration: 1 Mar 2021 → … |
Other
| Other | Australian Institute of Family Studies (AIFS) snack sized research showcase |
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| Period | 1/03/21 → … |