{
  "abstract": "Introduction Carers of people with non-memory-led dementias such as posterior cortical atrophy (PCA), primary progressive aphasia (PPA) and behavioural variant frontotemporal dementia (bvFTD) face unique challenges. Yet, little evidence-based support and guidance are available for this population. To address this gap in services, we have developed a novel, web-based educational programme: the Better Living with Non-memory-led Dementia programme (BELIDE). BELIDE was co-designed with people with lived experience of non-memory-led dementia and a previous pilot study confirmed its feasibility as an online intervention. This protocol outlines the randomised controlled trial (RCT) to evaluate the clinical and cost-effectiveness of BELIDE.Methods and analysis This is a parallel-group, single-blind, RCT of 238 unpaid caregivers of people diagnosed with PCA, PPA or bvFTD recruited internationally among members of the UK-based organisation Rare Dementia Support. The intervention (BELIDE programme) consists of six structured online educational modules tailored to each phenotype, a virtual onboarding session, real-life practice tasks and up to two follow-up facilitation sessions. The group receiving the intervention will be given access to the programme, while the control group will receive treatment as usual and be placed on a wait-list to receive access to the programme once they complete their participation in the trial. The allocation ratio will be 1:1 stratified by dementia diagnosis and gender. The primary outcome is reduction in caregiver depressive symptoms. Secondary outcomes include stress, anxiety, self-efficacy, quality of life and caregiver-patient relationship quality. Data will be collected online via Qualtrics surveys at baseline, 8 weeks and 6 months post-randomisation. A mixed-method process evaluation with a subgroup of intervention participants will explore barriers and facilitators for engagement. A health economics evaluation will also be conducted to assess cost-effectiveness. If effective, this programme could improve access to caregiver support for non-memory-led dementias by providing scalable, tailored education.Ethics and dissemination Ethical approval has been granted by University College London Research Ethics Committee (8545/007). The results will be disseminated via peer-reviewed publications, conferences, stakeholder events and open-access resources.Trial registration This trial has been registered prospectively on the Clinical Trials registry, first posted on 5 February 2024 under registration number NCT06241287.",
  "authors": [
    {
      "affiliations": [
        "Dementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, UK"
      ],
      "name": "Aida Suarez-Gonzalez"
    },
    {
      "affiliations": [
        "Dementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, UK"
      ],
      "name": "Emilie Brotherhood"
    },
    {
      "affiliations": [
        "ADAPTLab, Clinical Educational and Health Psychology, Psychology and Language Sciences, University College London, London, UK"
      ],
      "name": "Amber John"
    },
    {
      "affiliations": [
        "ADAPTLab, Clinical Educational and Health Psychology, Psychology and Language Sciences, University College London, London, UK"
      ],
      "name": "Oliver Hayes"
    },
    {
      "affiliations": [
        "Dementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, UK"
      ],
      "name": "Sam Rossi-Harries"
    },
    {
      "affiliations": [
        "Dementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, UK"
      ],
      "name": "Nikki Zimmermann"
    },
    {
      "affiliations": [
        "Dementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, UK"
      ],
      "name": "Valerie Mansfield"
    },
    {
      "affiliations": [
        "North Wales Organisation for Randomised Trials in Health & Social Care, Bangor University, Bangor, UK"
      ],
      "name": "Andrew Brand"
    },
    {
      "affiliations": [
        "North Wales Organisation for Randomised Trials in Health & Social Care, Bangor University, Bangor, UK"
      ],
      "name": "Zoe Hoare"
    },
    {
      "affiliations": [
        "Swansea Centre for Health Economics, Swansea University, Swansea, Wales, UK"
      ],
      "name": "Deborah Fitzsimmons"
    },
    {
      "affiliations": [
        "Swansea Centre for Health Economics, Swansea University, Swansea, Wales, UK"
      ],
      "name": "Katherine Cullen"
    },
    {
      "affiliations": [
        "Dementia Research Centre, UCL Queen Square Institute of Neurology, UCL, London, UK"
      ],
      "name": "Sebastian Crutch"
    },
    {
      "affiliations": [
        "ADAPTLab, Clinical Educational and Health Psychology, Psychology and Language Sciences, University College London, London, UK"
      ],
      "name": "Joshua Stott"
    }
  ],
  "title": "Better Living with Non-memory-led Dementia: study protocol for a randomised controlled trial of a web-based caregiver educational programme (BELIDE trial)",
  "uid": "24380e4a-9bf8-5aad-a137-dc98c78c05d8"
}