PIF member the Alzheimer's Society has released a report calling on the Government to 'fix social care now'.

Worst hit: dementia during coronavirus says lessons must be learned to avoid further winter tragedy, as dementia carers struggle with depression, insomnia and exhaustion.

Since lockdown on 23 March, an Alzheimer’s Society investigation has discovered family and friends have spent an extra 92 million hours caring for loved ones with dementia.

The charity reports the 'catastrophic impact' coronavirus has had on the 850,000 people living with dementia – with nearly 14,000 dying from the virus between March and June.

The Government’s COVID-19 winter plan has laid out a strategy for preventing the spread of coronavirus in care settings, but Alzheimer’s Society warns this does not go far enough and relies on regular testing when delays are still being reported.

It also says the plan fails to recognise the need to put family carers on an equal footing with key workers, an omission which will risk further dangerous isolation for residents with dementia.

Alzheimer’s Society Chief Executive, Kate Lee, said: "Our staff on the Alzheimer’s Society Dementia Connect support line speak to family carers every day who can’t get time to see the GP, are working all hours and barely sleeping – they’re completely burnt out.

"The Government must never abandon families with dementia again. Lessons must be learnt to prevent any further tragedy this winter.

"Coronavirus has laid bare the dire state of social care for all to see – the lasting legacy from this crisis must be a universal social care system, free at the point of use, that provides quality care for every person with dementia who needs it."

A survey of families affected by dementia

Key findings from a survey of more than 1,000 people affected by dementia include:

  • 95% of family carers said extra caring hours had negatively impacted their physical or mental health
  • 69% reported feeling constantly exhausted, 64% feeling anxious, 49% feeling depressed, and 50% developing problems sleeping
  • 14% had no time to see a GP about a health problem
  • 13% said they’d had an injury from caring
  • 83% per cent of family carers had seen a deterioration in symptoms  due to lockdown causing social isolation, and health or social care service interruptions
  • 76% of family carers whose responsibilities had increased during lockdown said they were putting in more hours because of these worsening symptoms
  • 45% of family carers felt the level of care their loved one with dementia needed was more than they could give
  • 50% spent more than 100 hours a week looking after or helping the person they care for since 23 March

During the pandemic, the Alzheimer’s Society Dementia Connect support line has been flooded with calls from people struggling with depression, insomnia and physical injury.

The charity’s support services have been used more than two million times since the beginning of lockdown.

Call to Government

Alzheimer’s Society is urging the Government to:

  • Commit to long-term reform of the UK’s social care system so it becomes available to all and free at the point of use, funded in the same way as the NHS, education and other public services
  • Guarantee that where care was stopped due to coronavirus precautions it will be reinstated when deemed safe, without the need for unnecessary further formal assessment
  • Ensure the Infection Control Fund remains in place until at least April 2021 and allow care providers to use that fund flexibly, including for infection control, technology and supporting visits
  • Recognise the key role informal carers play in the lives of people living with dementia by allowing at least one informal carer per care home resident to be a designated key worker and ensuring carers assessments can be completed and respite care is available
  • Develop a clear strategy to help people affected by dementia recover from the effects of the pandemic, including rehabilitation, support for mental and physical health and speech and language therapy

Alzheimer's Society is also calling on the NHS and local authorities to set out how they will involve social care providers and care homes in winter pressure planning.

Click here to read the report in full.