‘Exhausted’ family and friends in Wales spent 4.8 million extra hours caring for loved ones with dementia during lockdown

Family and friends of people living with dementia in Wales have put in 4.8 million extra caring hours since lockdown began, an Alzheimer’s Society Cymru investigation reveals.

The shocking figure has been blamed on the double whammy of lockdown making dementia symptoms worse, and the chronically underfunded social care system leaving them nowhere else to turn.

Across Wales, England and Northern Ireland the charity estimates family and friends have spent an extra 92 million hours caring for loved ones with dementia since 23 March.

In its new report ‘Worst hit: dementia during Coronavirus’ the charity reports the catastrophic impact coronavirus has had on the 850,000 people living with dementia in the UK, including around 48,000 in Wales.

It reveals nearly 14,000 have died in England and Wales from the virus between March and June. Alzheimer’s Society warns the Government of the lessons around testing, PPE, and infection control that must be learnt to protect people with dementia from coronavirus this winter, and prevent further tragedy.

The charity argues the tens of thousands of tragic deaths that occurred in care homes are a sobering illustration of the extent to which social care has been ignored, and starved of funding.

The Welsh Government’s Care Homes Action Plan has laid out a strategy for preventing the spread of coronavirus in care settings, but Alzheimer’s Society Cymru warns this does not go far enough, and relies on regular testing for care home staff and residents, which has been dogged by delays.

The charity also continues to hear of significant problems, including care homes not having their tests collected and results taking too long to be returned. The plan also has not recognised the family carers on an equal footing with key workers, an omission which the charity says will risk further dangerous isolation for residents with dementia.

The report reveals for the first time the painful experiences of families with dementia out in the community over the last six months, and urges the Government to fix the broken social care system they are propping up at huge personal sacrifice.

Since the pandemic thousands of people with dementia have seen a devastating deterioration in symptoms – due to lockdown causing social isolation, and health or social care service interruptions – reported by 83% of the family carers the charity spoke to.

Karen Beattie lives in Abergale, Conwy, with her husband Rob who has Alzheimer’s disease. She says lockdown has been a particularly testing time.

As Rob’s condition progresses, she admits to being concerned about what the future holds, a feeling that the pandemic and inevitable isolation has only made worse.

She said: “We used to travel around and do Dementia Friends sessions and he was a different man. Now he doesn’t get any break from the isolation.

“As a result, he’s is a bit depressed. He ran away recently and I had to call the police. He is getting worse.”

“Social services are involved now and our social worker is trying to get some support for me as I’m not coping at all. I’m not sleeping either. We’re not socialising, so it’s really difficult.

“I’m finding it hard to keep Rob upbeat. Alzheimer’s Society in Colwyn Bay have been a great help – our dementia support worker calls every week and gives advice. Even so, Rob is deteriorating quickly in lockdown.”

Karen’s experience mirrors that of carers across the UK. 95 per cent of family carers the charity surveyed said extra caring hours had negatively impacted their physical or mental health, with 69 per cent of over 1,000 people the charity spoke to reporting feeling constantly exhausted, 64 per cent feeling anxious, 49 per cent feeling depressed, and 50 per cent developing problems sleeping.

Half of those the charity spoke to spent more than 100 hours a week looking after or helping the person they care for since 23rd March. But even before lockdown, family and friends across the country were propping up the cash-starved social care system, with 40 per cent saying they’d put in over 100 hours a week prior to lockdown.

Alzheimer’s Society Cymru is urging the Government to:

– Commit to long-term reform of the UK’s creaking social care system so that 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 (particularly domiciliary care), it will be reinstated when deemed safe, without the need for unnecessary further formal assessment
– Ensure that the Infection Control Fund remains in place until at least April 2021 and care providers should be able to use that fund – Flexibly, including for infection control, technology and supporting visits.
– Recognise the key role that 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 have access to training, COVID-19 testing/vaccinations and PPE
– Ensuring carers assessments can be completed and respite care is available so that carers are able to take short breaks
– Develop a clear strategy to help people affected by dementia recover from the effects of the pandemic, including rehabilitation to – Counteract effects on cognitive or physical functioning, support for mental and physical health, and speech and language therapy.

The charity 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, ensuring that social care is on an equal footing with the NHS, to avoid a potential second spike and further deaths.

Sue Phelps, Alzheimer’s Society Cymru’s Country Director, said: “The tens of thousands of deaths of people with dementia – and the grieving families each one has left behind – must make us pause. I know if social care had been on an equal footing with the NHS we would not have seen deaths on such a scale.

“And I’m so angry that families and friends out in the community have been left to fend for themselves as the people they love with dementia have declined in front of their eyes. They have been fighting against the odds to give decent care to their loved ones.

“Our staff on the Alzheimer’s Society Cymru 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.”