Why the Government must prioritise people affected by dementia in coronavirus action plans

With substantial lockdown easements and the beginning of a new reality ahead of us, we examine the serious impact the COVID-19 pandemic continues to have on people affected by dementia.

The risk of infection may be falling, but lockdown measures are proving to have serious implications on the health and wellbeing of people living with dementia, their carers and loved ones.  

There is an opportunity for the Government to do something about this and we can give multiple reasons on why they need to. 

Coronavirus has had an excessive impact on people affected by dementia  

Since the outbreak of COVID-19 earlier this year, life as we knew it has changed drastically. However, significant evidence has shown that people affected by dementia, living in both care homes and the community, have been excessively impacted.  

Last month, data revealed that dementia is the most frequent pre-existing health condition for people dying with coronavirus. As well as being at risk of coronavirus, people affected by dementia are also facing devastating effects from social isolation and interrupted healthcare. 

Pearl and Enomwoyi

'We were left to get on with it' - Enomwoyi and her mum Pearl, who has Alzheimer's, have been impacted by the pandemic. Read their story.

New data from the Office for National Statistics has shown that in March and April 25,000 people living with dementia passed away in England and Wales. This is more than double the number of deaths we’d expect for March and April without the pandemic.

Within the increase of deaths, 65% were due to COVID-19, but there is an additional increase of 35% in people with dementia passing away that were not registered due to coronavirus. We need to understand why and for the Government to address exactly how people with the condition are being impacted. 

The death rate from the virus is falling but this doesn’t change the utter devastation families across the country have endured.  Anxiety continues to grow as the Government has not specifically mentioned dementia in their future plans and strategies.  

Families currently have no control over the care of their loved ones 

Since the outbreak we have heard from thousands of people living with dementia, their carers and loved ones who feel that the pandemic has caused them to lose complete control.  

The particularly slow response to address the vast impact of the virus on those who rely on social care has meant that many families have simply had to live with the circumstances, with no real guidance on what will happen next. 

Tony and Pauline Claydon

'I fear I might never see my wife alive again' - Tony's wife Pauline has dementia and lives in a nursing home. Read their story.

Rightfully, visits to care homes were stopped in March. However,  the majority of loved ones will  not have seen, or in some cases spoken to, their family members living in a care home for almost four months. There needs to be a plan with clear guidance on how this can start to change. A ‘blanket no’ approach is no longer appropriate or fair.

The nature of dementia means that people living with the condition need social contact and routine stimulation to keep cognitive deterioration at bay for as long as possible. With the pressure of this falling to under-resourced or unpaid carers, the Government must consider the implications for staff and the risk of carer burnout.

For many families, the quality and standard of care their loved ones receive in care homes or from home carers is exceptional and a real source of reassurance during this time. However, this doesn’t change the vital role that family care plays in supporting the progression of dementia.

People affected by dementia rely too much on the social care system to be forgotten  

Long before the coronavirus outbreak, the social care system did not work for people affected by dementia. The pandemic has only exacerbated just how much we need social care reform and we will continue to call on government to Fix Dementia Care.  

It is a greatly positive step that Government have committed to a Social Care Taskforce in response to COVID-19.  

What people affected by dementia need now is for dementia to be prioritised on this taskforce. We are working hard to ensure that the following are included in those action plans.

We are asking Government to implement:  

  • An immediate and rapid investigation to better understand why people with dementia are being disproportionately impacted. 
  • Guidance on safe social contact between people living with dementia – either in a care home or in their own homes – and their loved ones.  
  • Improved communications to people affected by dementia that are clear, consistent and straightforward. 
  • Safe, regular, repeated and appropriate testing of people affected by dementia in care homes and those receiving domiciliary care.  
  • Visits from healthcare professionals are re-introduced to care settings as soon as possible.  

What you can do now 

We are doing all we can to influence Government, so their next steps consider the needs of people affected by dementia.

We can’t do this without you, please join our campaign.

Join our campaign today

We will keep you updated on our progress and provide actions you can take to ensure people affected by dementia get the support they need. 

Join now


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It will soon be 4 months of isolation for my 92 year old mum. My visits are now down to one a week for a 15 minute window visit. The Carers are doing a good job, but they don’t see the deterioration that I see each time I visit. Mum is deteriorating before my eyes, her status has changed since the 12th March. I am ill, my mental health is in a downward spiral, yet Government and the news media remain silent no matter how many phone calls or emails I send. Enough is enough this lockdown has to end now. In the aftermath of all this, those in authority will become accountable. So you had better sit up and listen now. This isolation of the elderly especially those with dementia is cruel. 4 months ago I was confident my mum would have a good spring and summer and would be here for a few more years. Not now, those in authority have given her a prison sentence with no possibility of parole. She is a good innocent woman with a disease of no fault of her own and you remain silent. Now start talking to the distraught close family members, end this isolation give us your exit strategy tell us what your plan is, including when and how you propose to implement it. I want to spend time with my mum not be called in to see her in her final hours. Government and those in authority hang your heads in shame. I can see trouble ahead, calls for a public enquiry and law suits over this. You talk about everything, you ease the public lockdown, you talk about schools, air bridges, we see overcrowded parks and beaches, demonstrations and COViD-19 being spread by irresponsible people and still you remain silent on this very special minority group and continue isolate them from their families when they have limited time left. Cruel, callous, despicable, We could go on with all these descriptives but you do not listen. People in their 90’s are a special generation got us through the Second World War and look how you, their government are treating them. It is absolutely appalling. END THIS ISOLATION AND REUNITE CLOSE FAMILY TO THEIR LOVED ONES NOW !!!

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Philip... everything you have said above is exactly how I feel ... I can’t really add anymore except to say the restrictions of family visits to our beloved relatives who have Alzheimer’s in Care Homes is cruel and inhuman and this Government should be ashamed of their lack of action to help these vulnerable people and their distraught families ... when will this pain end?

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Thanks Michelle we keep fighting. Only today I have asked my MP to raise a question to the Prime Minister at Prime Ministers Questions in Parliament Also if you are not aware there is a campaign called John’s Campaign check it out.

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I am in a very similar situation but have not been allowed any visits to see my 92 yr old mum who is on the first floor and bed bound. I am heartbtoken. I can skype her but it id not the same. I agree with everything you say. I too have written to every one I can think of and have started a petition on change.org. We must try and stay strong. This is a fight that must be won..

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How can Residential care homes be runWell without all carers and nursing staff receiving in depth training to deal appropriately with. Alzheimer’s?
A New apprentership training programmes should Be introduced for carers which moves away from Box ticking and focus on achieving enhanced communication skills. This training becomes a national gold standard which all carers could aspire to achieve.
Government should legislate that all Care Homes have enough Well trained Staff to provide continuity of care for those with Alzheimer’s In residential care. This vital staff scheduling requirement should not be left to chance.
Post Covid-19, The government should be requested to fund the Alzheimer’s society to run a nationwide Residential Care monitoring service of current care homes provision. This would be an independent monitoring service, unlike the CQC which is funded by the Care providers.

Large companies with multiple Care Homes should be subject to a government investigation into how they currently run their care homes and have further lucrative NHS contracts stopped, if the investigation proves they have failed to deliver an adequate service.

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I lost my dad threw dementia in 2018. He was cared for in a nursing home who paid for his own care as my mother cared for him for 8 years in their home. Sadly my mother followed my dad into the home6 months later. She is now 89 has dementia herself & towards the end caring for my dad at their home. She is Paying for her care & now receiving end of life care. I haven’t been able to see my mum since lockdown. She deteriorated dramatically!! Over the last 2 weeks myself, as in her daughter, her son & my son have only just been able to visit individually . We can’t touch her, kiss her, hug her to say our goodbyes. Is this really fair after all she has done. They both worked hard Within their lives. I sadly don’t they deserved that! The nursing home residence were truly forgotten about!! As if they didn’t matter.

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My husband, aged 71, was in a care home with lewy body dementia.
Three patients were discharged from hospital in to the home with
coronavirus. Eight people died & my husband was diagnosed with the virus by the GP. He seemed to recover from this but it accelerated his dementia & he died six weeks after contracting the virus.

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So sorry to hear. I am touched by your story. I believe that there are lessons to be learnt due to this pandemic. The large scale mortality we had in the UK could have been prevented if the government acted on time! I pray for peace and comfort for those who have been affected. As a health and social care student, I know that many lives could have been saved if we have just acted on time!.

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Look at the treatment for dementia sufferers what is it that they want not what we think they need, This is something that has been needed for a long long time.We plan care plans but do we see what they want?

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I think the whole of the care sector should come under The National Health service. Carers should be properly trained to the same standard throughout the UK.They should be properly paid ,with a structure in place, as in nursing for advancement of those with the right qualities to make it a viable and respected career for young people.
The Care Homes should be part of the health service. At the moment it seems anyone can open a care home for profit,with the disasterous results we have just seen.

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I truly agree with you, carers in care homes should be valued more so they can in turn treat our love ones, with the loving care they deserve especially at a time like now when we if lucky can see our love ones by appointment only

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