Improving ‘living grief’ support for people with dementia and families

A total of 46 people contributed to the project, including:

• 31 unpaid carers of people living with dementia
• 12 staff members from Carers of West Lothian
• 3 professionals and academics working within the dementia sector

Evidence was gathered through individual conversations, peer support groups, workshops and meetings. A co-production group comprising staff, volunteers and carers also helped review findings and shape the project outputs.

Key learning

Feedback from unpaid carers highlighted eight interconnected themes that shaped experiences of living grief and informed the development of the project’s resources:

• Recognising carers’ strengths
• Support during the middle stages of dementia
• Understanding and naming living grief
• Maintaining a care-life balance
• Family and social connections
• Peer support and shared experience
• Communication and connection
• Planning ahead

Working alongside carers throughout the project highlighted the importance of creating practical, accessible support that reflects real experiences and everyday challenges.

Participants emphasised the value of:

• Recognising and validating experiences of living grief
• Providing support before people reach a point of crisis
• Creating opportunities for peer connection and shared understanding
• Offering practical tools and resources alongside information
• Ensuring carers feel recognised, supported and understood throughout their caring journey

Project outputs

The evidence gathered was used to generate a suite of resources for Carers of West Lothian, designed to support unpaid carers and better meet their needs. The following outputs were co-produced as part of the project:

• The Living Grief Support Hub
  The project’s main output, developed to provide carers with information, wellbeing strategies and practical support related to grief. The Hub is an online digital resource embedded within the main Carers of West Lothian website, which can be accessed any time and provides practical ‘in the moment’ strategies, on-hand information and tools for unpaid carers caring for someone living with dementia. As the CoWL service frequently responds to people already in crisis, the hub will provide an example of how an earlier intervention can support more unpaid carers.
  
  
• Living Grief Staff Guidance
  A staff guide was also developed to inform and upskill staff to facilitate engagement with the support hub that goes beyond simple signposting. This is achieved by recognising and validating an unpaid carer’s emotional response to the living grief they are experiencing. The guide highlights the importance of facilitating awareness of additional readily accessible information and practical support strategies for unpaid carers and bridges the gap between the digital toolkit and the experiences of unpaid carers. The guide also aims to increase staff knowledge, awareness and confidence in using the support hub website with unpaid carers of people with dementia.
  
  
• Introduction: Guide to Living Grief
  A short guide, produced to increase understanding and awareness of living grief among health and social care professionals. The guide can inform health and social care staff about living grief and how it can be experienced by unpaid carers of people living with dementia, and it features web links to the living grief support hub to highlight how this works in practice within a localised carers service.
  
  
• Two videos
  Videos developed to share carers’ experiences and raise awareness of living grief and the value of peer support, that can be shared more widely throughout the UK. These videos were filmed to support digital awareness and to amplify the voice of a former unpaid carer’s lived experience.
  

Project outcomes

The project’s main intended outcome was to improve unpaid carers access to emotional support and timely intervention when they are experiencing living grief.

Feedback from unpaid carers highlighted the importance of having language to describe experiences of grief and loss while caring. Participants reported that recognising living grief as a valid and shared experience helped them feel validated, understood and less alone.

Feedback from staff highlighted the value of resources that could support conversations about living grief and help strengthen support for carers. Practitioners emphasised the importance of practical, accessible materials that could be used in everyday practice.

Key project outcomes included:

• Raising awareness and understanding of living grief among unpaid carers and professionals.
• Creating opportunities for carers to reflect on and share their experiences.
• Developing resources that carers described as accessible, relevant and reflective of their lived experiences.
• Supporting staff to better recognise, understand and respond to experiences of living grief.
• Strengthening conversations around emotional wellbeing, grief and caring.
• Creating a co-produced legacy of resources that can continue to support carers and practitioners beyond the lifetime of the project.

The project also demonstrated the value of co-production, ensuring that the experiences of unpaid carers directly shaped the resources, messages and support developed throughout the project.