Rochdale woman reveals stark reality of caring for a loved one with dementia during the pandemic

A Rochdale woman who cares for her husband has revealed the stark reality of caring for a loved one with dementia throughout the pandemic.

Liz Brookes, 64, cares for husband Mike, 77, who has vascular dementia. She says the isolation of lockdown is having a negative impact on both of them.

She said: “Things have been much tougher through lockdown. I’m on the verge of not coping and I’m now on anti-depressants.

“I started with the medication because my anxiety levels are through the roof, and I needed a way of coping. I’m having trouble sleeping, and I’m constantly thinking about the future. I’m dreading winter. We’re very isolated.

“I have lots of people I can talk to, and I have contacts at Alzheimer’s Society too, but I’m missing face-to-face conversations. Zoom is all well and good, but you can’t have a proper conversation.

“The worst thing is that there’s no end in sight. We’re under house arrest just for being old and vulnerable. My biggest worry is that Mike won’t live long enough to see the end of Covid.”

Liz’s experience mirrors that of carers across the UK, as 95% of family carers surveyed by the Alzheimer’s Society surveyed said extra caring hours had negatively impacted their physical or mental health.

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.

Additionally, 69% of those 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 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 23 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.

In its new report, ‘Worst hit: dementia during Coronavirus’, the Alzheimer’s Society reports the catastrophic impact coronavirus has had on the 850,000 people living with dementia in the UK, including around 100,000 in the North West.

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 the 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.

The Alzheimer’s Society says it 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.

Urging the government to take measures, 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

Hazel Bayley, Alzheimer’s Society’s Head of Region, said: “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.

“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.”

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, saying they are completely ‘burnt out’.

In total, the charity’s support services have been used over two million times since the beginning of lockdown.

Anyone can call the support line – 0333 150 3456 – for help and advice.