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Fri, 3 July 2020

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Thousands of people with dementia dying or deteriorating – not just from coronavirus as isolation takes its toll

Alzheimer’s Society

6 min read

People with dementia worst hit by coronavirus in terms of deaths

Alzheimer’s Society calls on Government to put people with dementia at heart of lockdown solution, as devastating impact of isolation on health is revealed. Survey of 128 care homes reveals nearly 80% have seen a deterioration in the health of their residents with dementia due to lack of social contact.

As care homes enter their third month of closing doors to visitors, an Alzheimer’s Society investigation has found that lack of social contact is having a devastating impact on people with dementia:

  • 79% of care homes report that the lack of social contact is causing a deterioration in the health and wellbeing of their residents with dementia (1).
  • Alzheimer’s Society’s Dementia Connect support line is receiving hundreds of calls from relatives of loved ones in care homes, where at least 70% of residents have dementia, telling heart-breaking stories of people with dementia feeling confused and abandoned by the lack of visits, stopping eating, losing the ability to speak and ‘disappearing’.
  • One man told the charity “I’m really fearful my wife won’t recognise me at the end of this”, as fears about care homes become the top concern of the charity’s support line
  • Alzheimer’s Society is calling on the Government to place social contact at the heart of its plans to support people with dementia as the country emerges from lockdown.

Evidence now shows people with dementia are worst hit by coronavirus, with a quarter of those who’ve died having dementia, making it the most common pre-existing condition for deaths (along with diabetes). Aside from coronavirus, ‘unexplained excess’ deaths from dementia were 83% higher in England in April, and 54% higher in Wales, with nearly 10,000 deaths in total (2).

The charity thinks these increased numbers of deaths from dementia are resulting partly from increased cognitive impairment caused by isolation, the reduction in essential care as family carers cannot visit, and the onset of depression as people with dementia do not understand why loved ones are no longer visiting, causing them to lose skills and independence, such as the ability to speak or even stopping eating and drinking.

Another factor, concerning Alzheimer’s Society, is the impact of interruptions to usual health services, after their investigation found over three quarters (76%) of care homes reported GPs have been reluctant to visit residents. Additionally, where local authorities have adopted Care Act Easements, care support plans may not be being prepared or reviewed and detailed assessments of support needs may not be taking place. There has also been a 2% decrease in dementia diagnosis rates over April, meaning people are unable to access the vital support and advice services they need.

The charity believes that the NHS was prioritised at the expense of the care sector and has called for social care to be put on equal footing. Government action was too slow to protect care homes and home care workers; protective equipment (PPE) and testing was supplied too late and is still not at sufficient levels in care homes and in the community – 62 % of care homes were recently found still not to have had any staff tested. (3)

Care home staff surveyed by the charity, as part of its investigation to understand how people with dementia are being affected by the coronavirus pandemic, reported:

  • Residents feeling ‘isolated and…suffering depression’.
  • ‘Those in the end stages of dementia are declining at a faster rate than normal’.
  • One care home manager told Alzheimer’s Society that ‘residents living with dementia particularly are losing weight because they are constantly in their rooms and not eating and drinking as before’.

The charity is calling on the Government to prioritise safe social contact for care home residents as a health emergency by:

  • issuing guidance for care homes on the importance of social contact
  • ensuring enough personal protective equipment (PPE) for staff and visitors to allow social contact safely
  • placing family carers of people with dementia first on the list to get antibody tests

In recognition of the challenge of balancing social contact with infection control, Alzheimer’s Society is bringing together leading experts in infection control with dementia expertise together with colleagues in the care sector and other charities to discuss how this can best work. The charity hopes to use this to work with Government health ministers in planning the solution.

Alzheimer’s Society is additionally calling on the Government to set up a Dementia and Coronavirus Taskforce which can guarantee the safety of people with dementia through any easing of the lockdown and in case of a second spike.  The charity warns that this is particularly important given the Government’s recent suggestion that social care reform plans may be delayed, fearing lack of action will lead to further disaster for people with dementia if the virus peaks again later this year.

Trevor Salomon, 67, whose wife Yvonne, 64, is in a care home in London and was diagnosed with Alzheimer's disease when she was 57, said: “Coronavirus and lockdown changed Yvonne’s care home overnight. The familiar faces of family and friends are gone, and carers are behind masks and can’t touch or comfort the residents. Yvonne has lost her sparkle, she’s in a world she doesn’t understand. The staff at the care home are doing an amazing job looking after the residents, but we’ve only got video calls to keep in touch, and Yvonne doesn’t always understand them. If lockdown continues, I’m really fearful my wife won’t be able to recognise me at the end of all this.”

Kate Lee, Chief Executive Officer at Alzheimer’s Society, said: “It’s horrendous that people with dementia have been dying in their thousands, worst hit by coronavirus. We’ve already seen the devastating effect of coronavirus on people with dementia who catch it, but our survey reveals that the threat of the virus extends far beyond that. We have to stem the dreadful loss of life for those who were neglected at the start of this crisis - with a threadbare social care system already on its knees, ill-equipped to protect them.

Through Alzheimer’s Society’s Dementia Connect support line, we’ve heard from people up and down the country who are watching on, helpless, as their loved ones in care homes lose their skills and memories at a terrifying rate, despite care home staff doing incredible work with the resources they have. 

“The Government must put people with dementia at the heart of plans to ease lockdown and recognise the vital role of social contact so we can avoid further tragedy.

“People affected by dementia have had their worlds turned upside down, and our frontline team are needed now more than ever. We’re facing a loss in income of up to £45 million and we’re calling on the public’s support to help us make sure no-one affected by dementia is left to face this alone. Please donate at alzheimers.org.uk/emergency.”

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