Anthony Bethany F, Walton Jill, Brotherhood Emily V, Crutch Sebastian J, Edwards Rhiannon T
Bangor University, UK.
University College London (UCL), UK.
Inquiry. 2025 Jan-Dec;62:469580251332770. doi: 10.1177/00469580251332770. Epub 2025 Apr 21.
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.
痴呆症患者的家庭和朋友护理者所做的经济贡献十分巨大。患有罕见痴呆症患者的护理者在患者生前经历的悲痛情况复杂，因为护理者由于地理位置偏远且缺乏共同经历的机会而面临独特挑战。迫切需要专门的干预措施来支持缺乏当地支持的护理者。从提供者的角度，对一个专门为患有罕见痴呆症患者的护理者量身定制的新型在线群组式生前悲痛与丧失项目（“少有人走的路”）进行了微观成本分析。进行了敏感性分析，以探讨该项目面对面实施的潜在成本。还进行了预算影响分析，以探讨将该项目推广到英国各地患有罕见痴呆症患者的护理者所需的潜在成本。向总共20名参与项目的护理者分三轮提供悲痛与丧失项目的总成本为9848英镑，这相当于每位参与项目的护理者成本为492英镑。敏感性分析表明，面对面实施的总成本为14673英镑，相当于每位参与项目的护理者成本为734英镑。敏感性分析表明，面对面实施的总成本为14673英镑，相当于每位参与项目的护理者成本为734英镑。根据我们的预算影响分析估计，在英国范围内向患有罕见痴呆症患者（基于所有痴呆症患者的5%）推广该项目的总成本将为2177万英镑。据我们所知，这是首次对患有罕见痴呆症患者的护理者生前悲痛与丧失项目进行成本分析。这些初步成本评估为未来的成本分析和全面经济评估提供了一个基础案例，后者可以评估支持患有罕见痴呆症患者及其护理者对社会的成本和收益。
