Amelia Hill rightly reports that Alzheimer’s disease only contributes to between 60% and 70% of dementia cases (‘Part of you dies as well’: the toll of caring for loved ones with dementia, 8 May). As we are becoming ever more aware, dementia is a neglected area of health research and management, and social care, too: the consequences, as illustrated by the saddening case studies provided, are tragic.
After being diagnosed with frontotemporal dementia at 59, my brother died a pitiful and excruciating death five years later. Nothing could be done. Well‑resourced funding for research in the various forms of dementia is essential, and failings in health and social care must be grasped.
Contrasting observations can be made about living with dementia in England: my brother was based in Belfast, where social care and health are a single system, good supported accommodation was available, and the medical and social work structure performed effectively and continued throughout the passage of his disease.
Things weren’t perfect, and effort and advocacy were needed on his behalf; but the contrast with what is available in England was stark.
Hilary Kitchin
London
Amelia Hill’s focus on “the toll of caring for loved ones with dementia” perfectly captures why it is vital to provide emotional and practical support to family carers looking after someone with dementia. All carers are entitled to a carer’s assessment, which should connect them with services and information to make a difference to their daily lives.
However, the majority of family dementia carers have never received an assessment, let alone any subsequent support. With 700,000 families across the UK living with dementia, charities like ours can only do so much. We urgently need more support for unpaid family carers. Services must be designed around their needs and take account of changing individual realities – such as a carer reaching a time when they cannot even leave their own home.
A promise of funding to support carers is not enough. We need details of how support will be provided and sustained. The burden of dementia and dementia care could not be more pressing.
Melanie Blanksby
Interim CEO, Dementia Carers Count