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9 September 2022

Development of a decision support tool for older people who pay for social care, and their families

Kate Baxter , University of York , United Kingdom

Mark Wilberforce, University of York
Lyndsay Lindley, University of York
Maxine Watkins, University of Birmingham
Louise Overton, University of Birmingham
Dawn Dowding, University of Manchester
Yvonne Birks, University of York

Abstract

Background: Making decisions about social care in later life can be complex and emotional. In England, some older people receive funding to help pay for their long-term care costs, but many do not. People who pay all of the costs of their care from their income, savings and other wealth are known as "self-funders'.

Navigating the care system can be challenging. There is a lot of information online but people can find it hard to identify what is relevant to them. Research evidence suggests that although financial issues such as how to pay for care and how long funds will last are major concerns, people are reluctant to seek professional financial guidance or advice. Key barriers to seeking such help include not understanding the potential benefits of financial advice and fear of approaching a financial adviser, stemming in part from not knowing what to expect from a consultation or how to prepare.

In healthcare, decision support tools are used to help patients compare treatment options and feel more confident about making choices. Decisions about long-term care and paying for that care are at least as challenging as decisions about health care. They are further complicated because it is often the relatives of the person needing care who navigate the system. Yet a review of research in adult social care found evidence of very few decision tools to help older people plan and prepare for paying for care in later life. None were found in the UK.

Objectives: The objective of this project is to fill the gap by developing a prototype of a decision support tool to help older self-funders and their family carers overcome their fear of the unknown and feel confident to seek professional financial guidance or advice.

Methods: The content and scope of the tool were developed through:

Secondary analysis of transcripts of interviews with older self-funders and/or their family carers to determine which choices concern people the most;

Consultations with professionals about relevant content and how they would use the tool;

Searches for data sources providing factual information for use in the tool;

Workshops with self-funders (and potential self-funders), family carers and professionals;

Iterative testing of the draft digital version of the tool.

Results and conclusions: The resulting tool combines information about care and finance options, associated costs, written scenarios plus videos of people talking about their experiences, and questions to encourage users to think about their preferences and how confident they feel about seeking professional advice. The draft tool is being tested using "think aloud' techniques during summer 2022.

This presentation will describe the tool and plans for evaluation.


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