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  1. About Us
    1. About Us
    2. The Team
    3. Member Organisations
    4. Governance
  2. Research & Knowledge Mobilisation
    1. Research & Knowledge Mobilisation
    2. Impact
    3. Social Care and Social Work
      1. Social Care and Social Work
      2. Social Care - Kent, Surrey & Sussex Region
        1. Social Care - Kent, Surrey & Sussex Region
        2. Meet the team
    4. Starting Well: Children's Mental Health
      1. Starting Well: Children's Mental Health
      2. Meet the team
    5. Primary and Community Health Services
      1. Primary and Community Health Services
      2. Meet the team
    6. Living Well with Dementia
      1. Living Well with Dementia
      2. Meet the team
    7. Co-production
      1. Co-production
      2. Meet the team
    8. Public Health
      1. Public Health
      2. Meet the team
    9. Digital Innovation
      1. Digital Innovation
      2. Meet the team
    10. Economics of Health and Social Care
      1. Economics of Health and Social Care
      2. Meet the team
    11. Implementation
      1. Implementation
      2. Meet the team
    12. Rapid Evidence Synthesis
      1. Rapid Evidence Synthesis
      2. Meet the team
    13. Knowledge Mobilisation
      1. Knowledge Mobilisation
      2. Meet the team
  3. Public and Community Involvement
    1. Public and Community Involvement
    2. What is PCIE?
    3. Getting Involved
    4. Support for researchers
    5. Resources
    6. PCIE Guide
      1. PCIE Guide
      2. Contents
      3. Introduction
        1. Introduction
        2. An overview of ARC KSS
        3. Who can help you with PCIE?
        4. Terminology and PCIE
      4. Why and When to do PCIE
        1. Why and When to do PCIE
        2. Why involve members of the public in research?
        3. Why do members of the public want to get involved in research?
        4. When to get members of the public involved?
      5. How to do PCIE
        1. How to do PCIE
        2. Communication and Accessibility
        3. Budgeting
        4. Planning for involvement and engagement
        5. How to recruit members of the public
        6. Inclusive Research
        7. Approaches – different options for undertaking PCIE
        8. Facilitating meetings and Group dynamics
        9. Ethics
        10. Feedback
        11. Impact and Evaluation
      6. Examples/Case Studies
      7. Appendix/Useful tools
  4. Learning and Development
    1. Learning and Development
    2. ARC KSS AcademyARC KSS Academy
    3. Learning and DevelopmentLearning and Development
      1. Learning and Development
      2. Learning and Development Finder
      3. Researchers Journeys
    4. MentorshipMentorship
    5. Research communities of practiceResearch communities of practice
    6. Research Week Research Week
      1. Research Week
      2. Previous Research Weeks
    7. Your Health and Social Care Research Quick GuideYour Health and Social Care Research Quick Guide
  5. Resource Library
  6. Events
  7. News
  8. Contact Us

Dementia Journeys is a project that is helping people better understand what it’s like to care for someone with dementia at the end of life. It was led by researchers from University College London (UCL) and King’s College London as part of the EMBED-Care (Empowering Better End-of-life Dementia Care) and funded by the Economic and Social Research Council - National Institute for Health and Care Research (NIHR) Research Initiative and supported by the NIHR Applied Research Collaboration Kent, Surrey and Sussex (ARC KSS) and ARC South London.

Originally launched as an exhibition at Science Gallery London in 2024, Dementia Journeys shared real stories from unpaid carers—people looking after loved ones with dementia. The stories are honest and emotional, showing both the difficulties carers face, and the love and dedication they give every day.

The project has now been turned into a website and a free magazine. These resources include artworks, poetry, a short, animated film, and messages from the public. Visitors can also learn about dementia care research, get support, and take action—such as writing to their MP to ask for better care for people with dementia.

Kath Sykes, ARC KSS Living Well with Dementia Implementation Lead, says:

“This week is Dementia Awareness Week and a stark reminder that dementia continues to be the number one cause of death in the UK.

"Last year, colleagues at UCL and King’s College London shared these powerful, often unseen stories of unpaid carers. These personal accounts show the emotional and practical challenges they face, and the deep love they give every day.

"Please take a look at their stories, messages, and hope for better end-of-life care for all people living with dementia: Dementia Journeys.”

The project shows how research and creativity can work together to help more people understand dementia—and inspire action for change.

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