Care and Capability: Understanding Quality of Life in Older Adults Living at Home

The central aim of this thesis is to gain a better understanding about what is important for the quality of life (QoL) of older adults living at home receiving professional care services, and how to assess outcomes of this care in terms of QoL. Specifically, this thesis focuses on how the Adult Social Care Outcomes Toolkit (ASCOT) can be used for determining QoL of older adults in the Netherlands. The ASCOT is an instrument developed in the UK that was designed to evaluate outcomes of social care services by capturing information about an individual’s QoL in eight domains: control over daily life, personal cleanliness and comfort, food and drink, personal safety, social participation and involvement, occupation, accommodation cleanliness and comfort and dignity. The ASCOT is inspired by the Capability Approach (CA). In CA, a distinction is made between capabilities - the things a person has, and functionings - the things a person does. When someone has a capability, they can choose to use it or not. Someone who has access to food can choose to eat but can also consciously refrain from eating, for example in the case of a hunger strike. Central to this are both having access to possibilities, and the freedom to use them or not. . Older adults increasingly live at home and, in this setting, may be confronted with difficulties in their daily life affecting their QoL, for instance a decrease in mobility. The opportunities to engage in various activities and autonomy, i.e. control over one’s life, often decrease because of these difficulties. Care services can support older adults in dealing with challenges and maintaining a preferred level of functioning, contributing to their QoL. The ASCOT is introduced as an instrument to measure outcomes of care for older adults living at home, focusing on the perspective of the care receiver. Four questions are formulated that are the focus of this thesis: 1) How can the ASCOT be understood from the philosophical perspective of the CA? 2) What are important aspects of QoL from the perspective of older adults living at home? 3) How can care services contribute to QoL in older adults living at home? 4) How can important aspects of QoL from the perspective of older adults living at home be addressed in QoL instruments? Within this thesis, different methodologies are combined to answer these questions, in line with and inspired by an empirical ethics approach. In this way, the question how to define QoL in older adults is explored drawing on the strengths of both philosophical and empirical analysis. We conclude that there is a need for a broad QoL tool to evaluate care in older adults living at home. The ASCOT is such a tool. It operationalizes the core assumptions of the capability approach, translating this approach in a practical instrument. From the point of view of older adults, some important domains are missing in the ASCOT. These domains have been included in an extension of the ASCOT, i.e. the EQLT. The domains identified in the EQLT should not be used as tick boxes, but should serve as issues to be discussed in a conversation between clients and care providers. Further implementation of the ASCOT and the EQLT is recommended, not only in professional care, but also in informal care in the community.