'Lockdown has been so difficult' - standing with people affected by dementia during coronavirus

As the Government announces new guidance for social care and the lifting of lockdown measures, our CEO, Kate Lee shares her thoughts on the fundamental role our supporters have played in our response to coronavirus, and what comes next.

If someone could have told us what was ahead as we brought in 2020, I am pretty sure we all would have been in disbelief. 

After the General Election at the end of 2019, we were planning to continue our campaigning efforts for long term social care reform, greater investment in dementia research and improved awareness of dementia across society. 

‘As I took over as Alzheimer’s Society’s CEO in March, many plans had to be paused immediately.’

It is in times of crisis that people are forgotten – we weren’t going to let that happen to people affected by dementia. We needed to do all we could to protect and support people affected by dementia during the coronavirus crisis. 

Understanding the crisis

Our dementia advisers are here for you.

We worked quickly to establish what people affected by dementia needed in response to the pandemic. We contacted volunteers and listened to what people were telling us through our Dementia Connect support line and online community, Talking Point

‘I related all too well to the challenges of coronavirus. My mum has been living with dementia for 16 years, and in a care home since 2019.’

As a family, we were saddened by the prospect of not seeing Mum for a long period of time, especially as we play a vital role in her care. But we understood that such measures were in place to protect her, other residents and care home staff. 

Kate Lee with her mum

Kate with her mum, then in the early stages of dementia

Still, as April marked my parents’ 59th wedding anniversary, it was the first they have ever spent apart. Lockdown has been so difficult on my dad, as it has for so many people affected by dementia across the country.

Like many of you, I became concerned as the pandemic evolved – the impact of interrupted healthcare and the risk of deterioration without family visits. 

We were told that pubs and restaurants were re-opening and people were able to book haircuts. But the ‘blanket no’ approach to care home visits remained with no explanation. 

Because of you, we've achieved so much

Together, we have shouted loudly about the struggles the pandemic was posing.

I am still in awe at the way our supporters, campaigners and volunteers rallied round as we responded to the crisis the best way we could for people affected by dementia.

1. A plan for social care

With over 70% of people in care homes living with some form of dementia, coronavirus has put the thinly resourced social care system under the spotlight. 

People who receive care are not just numbers. They are my parents, your parents, brothers, sisters, aunts, uncles, grandparents, great-grandparents and friends. 

That’s why we called on Government for a dedicated national strategy to support social care. With thousands of you writing to your MPs and supporting our campaign on social media, the Government responded with a promise of daily data, adequate PPE provision and dementia training for support staff. 

2. Answers to tough questions

The daily data from the Office for National Statistics showed that people living with dementia are not only at risk of the virus itself, but that interruptions to their usual health services and support caused a sharp rise in dementia deaths

It devastates us that 25,000 people living with dementia passed away in England and Wales in March and April, double the number of deaths we’d usually expect. We called for an immediate investigation as to why people with dementia had been hardest hit by the pandemic.

The Government’s announcement of a Social Care Taskforce was a positive response. Because of your critical support to share our campaign work, I am delighted and proud to have been asked to chair a group of this taskforce. I am already working hard to ensure that the needs of people affected by dementia are considered at every possible stage. 

3. Reuniting families who have been disconnected

We have heard from so many families who have been completely disconnected as lockdown was enforced across the country. 

The Government closed care homes to visitors, but social contact and routine are fundamental to slowing the deterioration of dementia symptoms. There is concern that the lockdown itself contributed to the higher rate of dementia deaths.

I, along with other leading Dementia charity CEOs wrote to the Secretary of state this month, asking him to urgently take action. Following this, the Government produced new guidance for the social care sector that will allow family visits to care homes to resume in the coming weeks. 

We continue our conversations with government for named loved ones to be prioritised for regular testing, as well as giving them advice on infection control and protective equipment.

What’s next 

The reality is this virus will remain a threat. We don’t know what will happen in the winter. 

Some of our own support services have been reduced or stopped altogether – we need to get those back up and running in a safe and appropriate manner. 

We are still influencing Government through our Fix Dementia Care campaign, and we want to address falling diagnosis rates, risk to support packages and support for unpaid carers during the pandemic.  

We are trying to find solutions to these challenges, but we need your support. There are still many ways to get involved by joining our campaign to influence government or by donating to keep our support services running. 

Together we can fight for a better system of support for people with dementia, through this coronavirus period and for the years to come. 
 

We need your help to support people living with dementia

People living with dementia are disproportionately affected by coronavirus. Help us to provide support by joining our campaign or donating to our emergency appeal.

Join our campaign Donate now
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10 comments

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I am 72 and care for my husband who has Vascular Dementia, he is also bed bound, so I have to deal with all aspects of running a house , car and taking care of Fred. Unfortunately Fred has advanced dementia and has been bed bound since taking three falls in one weekend just before lockdown. Although our doctors surgery have been supportive it has been very difficult to know at times what to do if I have has difficulties, so we definitely need to improve the help needed for carers and dementia sufferers quickly.

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Hi Cynthia,

Sorry to hear you've been going through a difficult time.

If you're ever not sure what to do, remember you can always call the Dementia Connect support line and talk to a trained dementia adviser. You can call 0333 150 3456, or email on [email protected]. An adviser will listen to you and can give ideas, advice and support.

Hope this is helpful, and please do get in touch if you ever need more support.

Alzheimer's Society blog team

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Its great that Alzheimer's Society are fighting to get lots of things improved for the huge number of people not coping very well with this medical condition. In fact NHS regard it as a "Primary Health Need" & if life is sufficiently "complex" they will fund "Continuing Healthcare Benefits" to cover all the costs of the care needs. This includes "Respite Care" for the main carer & none of the money is taxable. Local Authority Care is "Means tested" so people with a major health need are made to pay6 for their own care! NHS is funded by taxpayers to cover all of our health needs in this country.

The system seems perfect in our country, but as we all know the reality is very different. In my opinion I believe NHS ration their CHC benefits to keep within their financial budgets. People need to fight for their rights, & do research before submitting an application for CHC.
After my Wife Pauline died I launched a website to help prepare people having had first hand experience & winning an Appeal Case to get our rights from NHS. Alzheimer's Society have a link to my website but in case its difficult to fine its at
https://continuinghealthcare.wordpress.com/
Perhaps the Society could promote this NHS Benefit more as it can fund private care in your own home , which is the best thing for most people I believe. But if a Care Home is eventually required it will pay this cost as well leaving peoples private money intact as it should be in my opinion to do as you wish , not being forced to pay for health needs.

Best wishes. Peter Garside

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Need some help with drug types to slow memory loss

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Hi Rosie, thanks for your comment.

We have some information on drug treatments here, which you may find helpful:
https://www.alzheimers.org.uk/about-dementia/treatments/drugs/drug-trea…

As when starting any new drug treatment, it's important to discuss this with your GP or a dementia healthcare professional. You can read more about how drugs are prescribed on this page: https://www.alzheimers.org.uk/about-dementia/treatments/drugs/prescribi…

Hope this is helpful.

Alzheimer's Society blog team

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My wife and I, both in our 80's and are offered wide support which sometime is slow to action because of heavy similar requirements.

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I’m still not convinced that the general public fully understand the implications of Dementia nor the affects it has on family life.
In order to get the Government to sit up more and listen, we need the public behind us, and we will only get this by shouting out about Dementia a lot more, we rarely see adverts or anything on TV regarding Dementia, unlike Cancer research etc.

I know it’s down to costs, but we seriously need to do more about informing the Public how serious Dementia is and how fast it is growing amongst us, even if it means putting posters on bus shelters and on side of Buses and bill boards.

Unless we drill this into people’s minds , I still think we are on a loosing battle, maybe a TV documentary about everything to do with Dementia and how it affects families, and costing etc and even interview Boris on TV and let families put questions to him .

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I am my husband's sole carer - we have no ongoing 'official' support and no family or friends support. Prior to lockdown our only 'support' was going out and about but all of that was cancelled. We are both quite fit and active, and have no financial needs, so no 'new' support has been offered to us during lockdown, and I haven't felt that it's right to ask for it when others are in much greater need. But lockdown has still taken its toll on us ... hubby has deteriorated, I'm exhausted from now having to do everthing at home and have now decided to give up my job as there's nothing else to 'give', we've felt neglected and lonely. It's been an emotional roller-coaster. So, as you can see, even those appartently 'living well with dementia' are also struggling behind their closed doors.

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I am 70 years old and look after my husband who is disabled and has vascular dementia i have cared for him for 11 years with no help at all but christmas on my 70th birthday he had a stroke which escalated his dementia and i had to either put him in a home or accept care i chose to bring him home just a week before lockdown the best decision i made.
It has been unbelievably hard i have voped with all the physical part but the dementia i struggle with so much it is the cruelest disease imaginable unless you live with it no one can possible know the devastating effect it can have on a partner.

All i seem to do is fight the system who are there to help but make things a hundred times worst
I wll be contacting my mp in the very near future

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We require more than just a social care support review from government review. It will be essential to see healthcare reformed as well.
Alzheimer is a medical condition.
Ask how well health commissioning authorities and local authorities by looking at the failures.

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