Sheffield woman reveals stark reality of caring for mum with dementia during lockdown

Family and friends of people living with dementia in Yorkshire and Humberside have put in 7.7 million extra caring hours since lockdown began, an Alzheimer’s Society 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.

Nationally, 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 76,000 in Yorkshire and Humberside. 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 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 for care home staff and residents, which has been dogged by delays.

Alzheimer’s Society 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.

Helen Oliver, 58, of Swallownest, Sheffield, says lockdown has been a strain of both her and her mum, Janet.

The 85-year-old lives alone in nearby Woodhouse, and was diagnosed with Dementia with Lewy Bodies in December, 2019, though her family believe she has been living with the condition for two to three years.

Helen, who visits her mum twice a day, says she has noticed a marked deterioration of her condition since lockdown began.

She said: “Before lockdown I’d take her out shopping or for a run out in the car somewhere, or she’d attend a support group, so there were ways to stimulate her.

“But that has all changed over the past six months and I have definitely noticed that her condition has deteriorated.

“I’m there twice a day, every day, and sometimes she’s fine, but there are occasions when she can’t even remember how to make herself a cup of tea.

“It’s very stressful because I am not just popping in to see her. I’m washing and cleaning, making her meals, making sure she’s taken her tablets, or that she’s showered.

“It’s exhausting because I’m basically running two households and, if I’m honest, there are days when I lack the motivation and energy, but I have to keep going because there’s no one else who can.

“She is very single-minded and independent, and the thought of going into care terrifies her. I understand that and I’ll support her for as long as I possibly can, but there are times when it is really tough.

“When I’m pushing her to take her tablets or telling her she can’t go out because of the virus, I’m the bad guy and, because of her condition, she can say hurtful things to me.

“There have been days when I have come home and wept and said ‘I can’t do this any more

but the next morning I go back and do it all again.”

Helen’s experience mirrors that of carers across the UK. A shocking 95% of family carers the charity surveyed said extra caring hours had negatively impacted their physical or mental health, with 69% of over 1,000 people the charity spoke to reporting 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, and more than one in 10 (13%) said they’d had an injury from caring.

This perfect storm has piled pressure on loved ones - 76% of family carers whose responsibilities had increased during lockdown said they were putting in more hours because of these worsening symptoms. Tragically, even when putting in the exhausting extra hours, 45% family carers felt the level of care their loved one with dementia needed was more than they could give.

50% of the people Alzheimer’s Society spoke to spent over 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% saying they’d put in over 100 hours a week prior to lockdown.

During the pandemic Alzheimer’s Society Dementia Connect helpline has been flooded with calls from people struggling with depression, insomnia and physical injury to care round the clock for people with dementia, telling us they are completely ‘burnt out’. In total, the charity’s support services have been used over 2 million times since the beginning of lockdown. Anyone can call the support line - 0333 150 3456 – for help and advice.

Judith King, Head of Region for Alzheimer’s Society, 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 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.”

Alzheimer’s Society 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.

FROM THE EDITOR

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