‘Exhausted’ family and friends spent 92 million extra hours caring for loved ones with dementia since lockdown

Alzheimer’s Society’s new report, ‘Worst hit: dementia during coronavirus’, says Government must fix social care now, learning lessons to avoid further winter tragedy, as dementia carers struggle with depression, insomnia and exhaustion.

Since coronavirus (COVID-19) 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 dementia1, due to the double whammy of lockdown making dementia symptoms worse, and the chronically underfunded social care system leaving them nowhere else to turn. 

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 – with nearly 14,000 dying 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 need to put family carers on an equal footing with key workers, an omission which the charity says will risk further dangerous isolation for residents with dementia

A survey of families affected by dementia

Now, the Society’s new 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. 

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 ten (13%) said they’d had an injury from caring2.

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. 

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% of 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. 

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 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.

Gordon's story

76 year old Gordon Weldon from Scarborough, who was diagnosed with prostate cancer last year and cares for his wife Sue with frontotemporal dementia, has lost the paid carer who visited an hour a day, and Sue can no longer attend a day care centre four days a week.

Gordon said:

'The carers used to really help with my stress, giving me some time off to look after my own health. But when lockdown hit, I stopped getting that care and the day centre closed. It was all on me, and I didn’t want Sue sitting in bed all day.

'So, I took it all on – the morning getting up, cooking all the meals, all the washing, the housework.'

'Sue’s not able to do anything for herself now, so it was exhausting and I began to feel very depressed.' 

'It’s obvious that the Government think unpaid family carers will sort themselves out. We’re not a priority.'

Alzheimer’s Society Chief Executive, Kate Lee, 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.

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

Get your copy of the report

The full report, 'Worst hit: dementia during coronavirus', is available to download (PDF) at alzheimers.org.uk/worsthit

Download now

References

Details of survey responses

A survey of informal carers was carried out using SmartSurvey between 13 and 31 August 2020.

Responses from 1,095 people who live in England, Wales or Northern Ireland (the three nations in which Alzheimer’s Society operates) and who care for someone with dementia in their own home, the informal carer’s home or sheltered housing (but not care homes or nursing homes) were analysed. 

  1. Hours spent caring
    • We asked carers about the number of hours they spent each week looking after or helping the person they care for, both before lockdown started on 23 March, and after lockdown started. 953 people gave responses for hours cared per week both before and after 23 March.  

    • Answer categories were providing care for up to 9 hours (1-9 hours), 10-19 hours, 20-34 hours, 35-49 hours, 50-74 hours, 75-99 hours or 100 hours or more.  

    • 40% responded that they spent 100 or more hours a week providing care before 23 March. 50% responded that they spent 100 or more hours a week after 23 March. 

    • Using the number of responses in each category and the lowest value of each category we calculated the average number of hours per person per week. Before 23 March the average was 55.4 hours per person per week. After 23 March the average was 65.2 hours per person per week, giving an average increase of 9.8 hours per person per week. 

    • Based on the number of informal carers in the UK, we estimate that family and friends spent an extra 92 million hours caring for loved ones with dementia in the 20 weeks between the start of lockdown on 23 March and our survey starting on 13 August. In the same period of time since 23 March based on the responses carers would have expected to spend 522 million hours caring for their loved ones with dementia, but due to the pandemic this number reached an estimated 614 million. 

    • Based on a Survey of Adult Carers in England estimate that 68% of carers are women we estimate that of the 92 million extra hours, women provided 62 million, and men provided 30 million. 

    • Full methodology available to download (PDF) at https://www.alzheimers.org.uk/lockdowncarerhours

  2. Further survey questions
    • 802 people answered the question ‘Has the health of the person living with dementia you care for declined during the pandemic?’ Of these respondents, 83% answered ‘yes’. 
       
    • When asked if their caring responsibilities had increased since lockdown began (23 March), 73% answered ‘yes’. Of these: 
      • 76% said this was due to worsening dementia symptoms 

      • 41% said lockdown means the person they care for can’t do the same tasks 

      • 11% told paid carers not to come due to the risk of coronavirus being spread 

      • 9% said the person with dementia that they care for has developed health problems but hasn’t been able to get a healthcare appointment  

      • 8% said they are too scare to move their loved one to a care home in case they catch coronavirus 

      • 7% said paid carers have not been available 

    • Of the 800 people who answered the question, ‘Have increased caring responsibilities since 23 March had an impact on your mental and physical health?’:
      • 69% reported feeling constantly exhausted (71% of women, 63% of men) 

      • 63% said they feel anxious (68% of women, 50% of men) 

      • 50% have developed problems sleeping (52% of women, 46% of men) 

      • 49% reported feeling depressed (46% of women, 58% of men) 

      • 14% said they haven’t had time to see their GP about an ongoing health issue (14 % of women, 14% of men) 

      • 13% said that they have physically injured themselves (14% of women, 11% of men) 

    • 45% of the 1,088 respondents who answered ‘Do you feel able to provide the level of care needed by the person with dementia you care for?’ said ‘no’. 

 More details of the survey results and methodology are available from Alzheimer's Society upon request

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