# The Road Less Travelled: A Micro-Costing Analysis of an Online Pre-Death Grief and Loss Programme for Carers of People with a Rare Dementia

**Authors:** Bethany F. Anthony, Jill Walton, Emily V. Brotherhood, Sebastian J. Crutch, Rhiannon T. Edwards

PMC · DOI: 10.1177/00469580251332770 · Inquiry: A Journal of Medical Care Organization, Provision and Financing · 2025-04-21

## TL;DR

This study analyzes the costs of an online grief support program for carers of people with rare dementias, comparing online and in-person delivery and estimating costs for a UK-wide rollout.

## Contribution

The first costing analysis of a pre-death grief and loss program for carers of people with rare dementias.

## Key findings

- The online program cost £492 per carer participant, while face-to-face delivery would cost £734 per participant.
- A UK-wide rollout of the program would cost approximately £21.77 million.
- This analysis provides a base case for future economic evaluations of similar programs.

## Abstract

The economic contribution of family and friend carers of people with dementia is substantial. Pre-death grief experienced by carers of people living with a rare dementia is complex as carers are faced with unique challenges due to geographical isolation and a lack of access to shared experiences. There is an urgent need for specialised interventions to support carers lacking local support. A micro-costing analysis of a novel online group-based pre-death grief and loss programme (‘The Road Less Travelled’) tailored for the carers of people with rare dementias was conducted from a provider perspective. Sensitivity analysis was conducted to explore the potential costs of face-to-face delivery of the programme. A budget impact analysis was also conducted to explore the potential costs of roll-out of the programme to carers of people living with a rare dementia across the UK. The total cost of delivering three waves of the grief and loss programme to a total of 20 participant carers was £9848, which equates to a cost of £492 per carer participant. Sensitivity analysis indicated a total cost of £14 673 for face-to-face delivery, equating to £734 per carer participant. Sensitivity analysis indicated a total cost of £14 673 for face-to-face delivery, equating to £734 per carer participant. We estimate from our budget impact analysis that the total costs of a UK wide roll-out to people living with a rare dementia (based on 5% of all people with a dementia) would be £21.77 million. To our knowledge, this is first costing analysis of a pre-death grief and loss programme for carers of people living with a rare dementia. These initial assessments of costs provide a base case for future costing analyses and full economic evaluations which can assess both the cost and benefits to society from supporting people with rare dementias and their carers.

## Linked entities

- **Diseases:** dementia (MONDO:0001627), rare dementia (MONDO:0019515)

## Full-text entities

- **Diseases:** Pre (MESH:D058246), Death (MESH:D003643), Grief and Loss (MESH:D016388), Dementia (MESH:D003704)
- **Species:** Homo sapiens (human, species) [taxon 9606]

## Full text

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## Figures

4 figures with captions in the complete paper: https://tomesphere.com/paper/PMC12035052/full.md

## References

44 references — full list in the complete paper: https://tomesphere.com/paper/PMC12035052/full.md

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Source: https://tomesphere.com/paper/PMC12035052