{
  "abstract": "Aim To map the decision-making journeys of caregivers of people living with dementia, as a guide towards better caregiver support.Background Family caregivers have a crucial role as substitute decision makers, tasked with honouring personal and medical wishes for persons living with dementia (PLwD). However, they can feel decisional uncertainty, unsupported, unrecognized as partners-in-care, and unaware of dementia trajectories.Methods Caregivers and community organizations in Alberta, Canada were engaged as study team partners throughout the project. A qualitative study was undertaken to map caregivers’ decision-making journeys. Semi-structured, one-to-one interviews were conducted with 25 caregivers recruited through community newsletters. We utilized graphic recording of the interviews for thematic analysis, alongside researcher line-by-line coding of verbatim transcripts, to develop a summary map of caregivers’ journeys in decision-making and decision-supports. This was then shared and refined through 3 focus groups (9 participants) and presented at a World Café with 5 caregivers and 20 healthcare providers and dementia organization stakeholders to explore implementation strategies.Results Caregivers of PLWD struggle with decisions in seven-key areas. The journey map developed from their experiences depicts these as : ‘Getting a diagnosis’, ‘Financial, legal and understanding your person’s wishes’, ‘Driving’, ‘ Day-to-day decisions’, Taking care of yourself, ‘Where to live?’ and ‘End of life Care Decisions,’ Caregivers often described themselves as being ‘lucky’ to happen upon information to help them make decisions through word-of-mouth or through their own advocating. Areas of support needed include emotional support, guidance on ethical decisions, knowing which future decisions to prepare for and finding resources. Available local resources were added to each decision map.Discussion Caregivers are struggling to make decisions for their PLwD. Our map of a caregiver’s journey in decision-making illustrates common decisions points and provides emotional, practical and informational content to support them.Unique Contribution Graphic recording is a novel, accessible method for sharing research data with patient partners and stakeholders. Iterative development of a generic journey map from participants’ varied experiences created an intuitive, low text burden resource for caregivers to use alone, together with PLwD, or other family and healthcare providers.Implications ‘Decision Roadmaps’ can provide an engaging, rapidly accessible, visual overview of the broad advance care planning decisions people may face. This dementia-specific map displays locally available resources. Stakeholder organizations have integrated the map into their services and used it to identify gaps in the times and settings when caregivers most need support.",
  "authors": [
    {
      "affiliations": [
        "University of Calgary, Calgary, Canada"
      ],
      "name": "Jessica Simon"
    },
    {
      "affiliations": [
        "University of Calgary, Calgary, Canada"
      ],
      "name": "Seema King"
    },
    {
      "affiliations": [
        "Patient Partner, Calgary, Canada"
      ],
      "name": "Sam Hester"
    },
    {
      "affiliations": [
        "Patient Partner, Calgary, Canada"
      ],
      "name": "Gwenn Boryski"
    },
    {
      "affiliations": [
        "Patient Partner, Calgary, Canada"
      ],
      "name": "Daniel Gaetano"
    },
    {
      "affiliations": [
        "University of Calgary, Calgary, Canada"
      ],
      "name": "Maria Santana"
    },
    {
      "affiliations": [
        "University of Calgary, Calgary, Canada"
      ],
      "name": "Lorraine Venturato"
    },
    {
      "affiliations": [
        "University of Alberta, Edmonton, Canada"
      ],
      "name": "Jasneet Parmar"
    },
    {
      "affiliations": [
        "University of Calgary, Calgary, Canada"
      ],
      "name": "Jayna Holroyd-Leduc"
    }
  ],
  "title": "1239 ‘I never thought I’d have to stand there and make that decision.’ Journey-mapping caregivers’ decisions",
  "uid": "11050172-1ce3-541b-be0a-5ad1e74ac22d"
}