With a new Government in place in the United Kingdom, Trevor Salomon, Chairperson of the European Dementia Carers Working Group (EDCWG) was approached by the Alzheimer’s Society to write a letter to the Chancellor of the Exchequer, Rachel Reeves, from his perspective as a carer/campaigner, stressing the need for more support for dementia, in particular financial support. The letter formed part of a welcome pack, delivered in a ministerial-style briefcase, outlining the Alzheimer's Society’s calls and asks, but also positioning the organisation as an ally and including information about their support resources. Here is the text of the letter, dated 6 August 2024:
Dear Chancellor,
I am a carer for my wife, Yvonne, who has been living with young onset dementia since 2009 when she was just 53 years old. For the first 10 years I coped alone looking after her at home until her double incontinence became a tipping point for me when I realised that she needed 24x7 professional care, something which I could not give her. With dementia now recognized as the biggest cause of death in the UK, I ask myself why there is so little humanity and compassion shown by successive Governments towards those living with this baffling disease as well as to their carers? We and our families bear the financial brunt of care costs because dementia is so underfunded. How, in 2024, and by what yardstick can this possibly be deemed fair given that dementia is now considered one of the six major health conditions of our time?
Next year, my wife’s savings will dry up, after being a self-funder in her care home for over six years. I am sure you can imagine how much we have spent on her care, but I will tell you anyway; it is many hundreds of thousands of pounds. And yet I begrudge none of it because her care has been exemplary, including throughout the dark days of the pandemic when I could not visit her for almost 14 months. However, when her money runs out, she will be at the dual mercies of the local authority for funding and the empathy of the care home management in accepting a lower contribution for her fees than they have hitherto been receiving since 2019 when she became a resident. I am already stressing about the outcome and at the same time am hugely disappointed by the Government’s decision not to proceed with the cap on social care costs in England. Whilst understanding the pressures you face with budgeting, it’s surely time to bring hope and financial support to the almost 1,000,000 people impacted by dementia and their families who, like me, bear the emotional, physical and cost burden of caring for loved ones. If reform is not introduced now, then when?
Thank you for taking the time to read my letter. I look forward to your response. Yours faithfully,
Trevor Salomon
