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

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.