Recent research commissioned by the leading dementia charity, Alzheimer’s Society, which surveyed 3,476 people affected by dementia, found that a quarter of carers polled said that the person they care for was not given advice about how to seek support following their diagnosis – and was left to cope alone.
However, as alarming as this is, the carer crisis doesn’t end there.
Not only are people affected by dementia not informed about the help that’s available to them, only 8% had received a carer’s assessment, even though this is a statutory requirement.
HuffPost UK spoke with the charity to learn what help needs to change for carers, and more about this report.
The crisis facing people affected by dementia in the UK
Alzheimer’s Society said that around one million people are living with dementia in the UK.
Dementia is the leading cause of death in the UK and the biggest health and social care issue of our time, but isn’t the priority it should be.
One third of people living with dementia do not have a diagnosis. This means that thousands of people are facing the devastating realities of dementia without access to the vital care and support that a diagnosis can bring. Early diagnosis is crucial to manage symptoms and avoid ending up in crisis.
As dementia experts, their vision is for people living with dementia in England, Wales and Northern Ireland to be able to easily access affordable, high quality social care that meets their specialist needs, delivered by a well-trained workforce. And for unpaid carers to receive the statutory support to which they are entitled and to be able to take breaks through access to dementia-specific respite care.
Alzheimer’s Society is calling for all carers to have access to proper annual assessments of their needs in line with statutory duties. Local systems must proactively offer assessments to individuals identified as carers, rather than waiting for requests, and ensure that carers of people living with dementia receive assessments at least annually.
The charity also wants to see ring-fenced investment to increase access to dementia-specific respite care so that unpaid carers can take much needed breaks and manage their own well-being.
In a statement to HuffPost UK, Alzheimer’s Society said: “Governments should ensure local systems have the funds required to implement both proactive annual needs assessments and increase dementia-specific respite care.
“By prioritising these measures, we can alleviate the pressures on unpaid carers and ensure they receive the recognition and support they deserve.”
The Carnal Farrar economic impact of dementia (2024) report found:
- One third of unpaid dementia carers report spending more than 100 hours per week caring for a dementia patient
- 16% of dementia carers have to give up work and nearly 2/3 are living with their own health conditions, with 1/5 reporting that they are neglecting their own health
- Despite this, only 14% of carers receive some form of respite care
- 70% of carers want more support
- Dementia costs the UK £42 billion per year. This will rise to £90 billion by 2040 unless urgent action is taken
- The costs of dementia rise significantly as the condition progresses. The annual, per person cost for mild dementia is £28,700 compared to £80,500 for severe dementia. This is largely due to people with severe dementia needing more support from social care and unpaid care than people with mild dementia
- An unacceptable amount of financial impact – 63% of the £42 billion cost of dementia - is shouldered by people living with dementia and their families
To share your story and help make a huge difference to the lives of everyone affected by dementia, visit alzheimers.org.uk/stories