'People with dementia have been the last to be considered in this pandemic' - Janet's story

Janet moved in with her mum, Dorothy, who has mixed dementia, to be her sole carer. The coronavirus pandemic has seen all their support and social contact drop away. Now, Janet is calling on Government to address the needs of people affected by dementia.

Caring for Mum

It came as a complete bombshell when Mum was diagnosed with mixed Alzheimer’s disease and vascular dementia eight years ago. 

She lived on her own but four years ago she fell and broke her neck. When she came home from hospital, she needed a lot of care.

I lived with my husband in our family home but I decided to move in with my mum. I just wanted to get her back on her feet. But her needs only increased and I never went home. 

I didn’t realise what I was in for.

Janet with her mother Dorothy, who is wearing a neck brace

Janet's mother, Dorothy, had a fall and broke her neck


The GP came out to see Mum as coronavirus started rising. I was told that the hospital wouldn’t be the best place for mum if she needed medical care because there were so many risks.

I was sure that if Mum or I caught coronavirus, or even flu, this would be devastating for both of us. I was asked to sign a do-not-resuscitate (DNR) order. It felt at the time as if the GP had another agenda.

I decided the only way to ensure we could be safe was to totally isolate ourselves. I didn’t have any choice.

It’s just been Mum and me for the whole of lockdown. We’re completely isolated. I can’t see my husband, children or grandchildren. Nobody’s been in the house.

My husband does the shopping for us but he drops it off then leaves to reduce our contact because he’s higher risk too so we’ve had very little contact.

My little grandchildren used to sit on our laps while we played games with them – we can’t do any of that now. That has been devastating. We tried garden visits with my children and grandchildren but it felt like Mum was an animal in a zoo. She was also cold and uncomfortable.

Dorothy with her great-grandchild on her lap, before coronavirus

Dorothy with her great-grandchild on her lap, before coronavirus

Before lockdown, Mum had some sort of enjoyment in life. Now her eyes are empty and she seems depressed, anxious and unresponsive at times. Maybe these changes would have happened anyway but they’ve definitely got worse during lockdown.

Her dementia has really progressed.

I used to take Mum to a day care centre within a residential home. They stopped people going in and haven’t opened since. 

Most of the reporting about lockdown has been around care home visits. I think what’s happened in care homes is absolutely dire but I’m in a dire situation too. What will happen to mum if I fall ill?

Despair with the Government

It feels to me that the Government aren’t bothered about the elderly and vulnerable at all. People with dementia have been the last group to be considered. 

I’ve got no confidence in them, which just makes me angrier and lose hope in what they’re actually doing.

Social care has been ignored for years and the pandemic has shown its shortcomings. It needs to change.

I’ve written to my MP a few times but the only reply I received was a generic reference to out-of-date guidance. I absolutely despair. They need to get testing sorted so I can trust carers to come into my house again. Unpaid family carers desperately need respite and government support.

Unclear future

Even before lockdown I was exhausted. I needed a break. Mum’s care is literally 24 hours. She gets up in the night and bangs into things. She has osteoporosis so every time she falls she breaks something. You never know what she’s going to do.

Our dementia advisers are here for you.

I’ve hit a wall. I don’t know how I’m going to be able to carry on. I can’t see much light at the end of the tunnel and I wonder about what the future holds.

I was at the beginning of retirement when Mum got diagnosed. I don’t feel as if I’ve had one. I wouldn’t change my decision to care for mum but I never thought I’d be doing this in a pandemic.

I couldn’t imagine how it would get any worse but it has. It’s been horrendous.

Family carers are being ignored by Government. My only way of coping is to try to blot it out, forget about yesterday, and not think about tomorrow. Just get through one day at a time. That’s all I can do.

Dorothy holding a picture of her grandchildren

Dorothy holding a picture of her great-grandchildren

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The impact of coronavirus has been shattering for people affected by dementia. Urgent action must be taken to better protect people ahead of the winter.

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It's Disgusting the way people in care homes and their family are deprived of seeing them it is bad enough, this pandemic is making it a million times worse the government should be and have to do something about this

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My husband and I of 40yrs are now living with my mum as I have become her carer My mother in law has Lewy body and is 70 miles away in a care home and is struggling not being able to see us or her family as we did every day.
Covid has made things worse for us all on many levels and we feel as many others let down by no one listening to how it has affected dementia patients and those close to them that love and look after them. We need help from government too, Carer’s are so Important and need to be recognised more for all the work they do.

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This is an emergency for many carers and their families .More help and support needs to
be made available . It is dreadful that so many are at breaking point !

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I work in a professional capacity with patients and carers of patients with dementia in the community. I have previously taken pride in being able to signpost people to services which can help them, and seen the improvements that attendance at day care, being part of social groups has for patient and carers well being. A lot of these supports and groups are just not happening at the moment. Some services are still running in a "virtual" way but often older generations and those with sensory or communication problems cannot join in this way. Locally our day services have all been suspended and were actually only just opening back up when talk of 2nd lock down was happening. Our team has continued to see people in urgent need, and has been monitoring many more people, and their carers who are referred in(over the phone). I've seen people with dementia and their carers suffering intense isolation from being parted from family and friends, and support networks they once had and have felt unable to help in any great way, other than making a friendly phone call every week or so, and listening to their stories . Even though there is understanding of why we are all living and working in this way, (to protect vulnerable people from becoming very ill, and to protect our NHS) it really is heartbreaking at times. Lots of people who were managing at home, with the help of a live in carer have unfortunately had to go into 24 hour care, and once there are in quarantine for two weeks, then unable to see loved ones. Activity sessions in sheltered living have all stopped too. People sitting alone in flats with few positive distractions other than TV. Many people with dementia have not been able to understand or follow the rules of life in COVID-19 times. It must seem a frightening world at times. There are so many really difficult scenarios which as this has been a situation we have never encountered before has tested us all, on all sides of the fence. I do agree with previous comments that people with dementia or any mental health problems for that matter, need love, physical contact and a sense of belonging and inclusion to thrive and feel comforted and secure. It's such an unmet need at the moment. There surely must be some way to allow some of this contact and activity to happen safely. I hope things improve soon.....

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You can’t go to see a love 1 in a care home, but if they could get out, u could have met them down the pub, the government is a joke

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I look after my mum and live with her. The first lockdown did for her and caused her dementia to worsen. The doctor classed a video of her sleeping as "having seen her" so in the event of her passing on, the coroner would not need to be involved. There does not seem to be any practical help forthcoming. The point to the authorities is that if the carer is not looked after, then the system will have to look after both the carer and the cared for, when the carer's health declines. The system's cost will go from zero to two. The system takes tax from the cared for and carer but doesn't want to spend it on them by the GP rationing access to health. There are too many disparate pieces of the care system that can't or won't work together. When they should be providing access to facilities. There needs to a mediator between my mum and myself because as far as my mum is concerned, it is "my duty to look after her" regardless of the impact on my health. A mediator could relieve that tension between the parties to alleviate any resentment that the carer's life has been put on pause.

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I have a friend that was in a care home. Her husband called her on his IPhone and someone at the home would get his wife on face time on an IPhone so that they could see each other and talk. That was good, not as good as he would have liked, but better than not seeing her at all.
WE have all seen on TV those visiting outside the window. Maybe you could have the kids and grand kids come over and be outside a window and communicate with phones?????????? Know you need a complete break. Best of luck. Take care of yourself as best you can.

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It didn't really work having window visits as we especially mum couldn't hear and the effort of trying to listen tired her and made her retreat to bed. Nothing replaces the physical contact of touch and hugs. Nothing needs to be said then but the person with dementia knows they are loved and valued.

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As a carer for my husband Who has Alzheimer’s I am not looking forward to another lockdown. During the last one I hit the bottom more than once, I felt I couldn’t cope, I wanted to run away, I cried a lot. But of course I carried on. Not being able to see family didn’t help.
My daughter has said she won’t see me get into that state again and will be our support.
There is little or no support from anywhere else.

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My Mum Joan is 91 and has been in a care home for just over 2 years now. I used to see her every day giving hugs and kisses and interacting with her. Since the first lockdown ended we were for a short while able to see her in the garden for just 30 mins (no touching) Mum takes that long to process that I am there, then gets taken away it was heartbreaking. Now they have built a structure which is just like a cell, Mum would be frightened and confused so made one of the hardest decision I have ever had to make which is not to visit her it is so so hard. I have tried everything I can think of to make the government listen I just don’t know where to go now. My Mum has certainly changed she has lost weight and just stares into space, all that’s needed is to be able to be part of her life as we do not know how long she will be with us. Its beyond me that the relevant people are not listening.

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My father has advanced Alzheimer’s and is primarily cared for by my mother.
I have contacted the Welsh Assembly and Westminster.
The response from both was pathetic and in parity with those shared by others here.
The elderly just aren’t recognised as being a primary concern of elected governments. I truly believe that much of the ignorance is deliberate as the cost both in time, care, love, respect and dignity is absorbed by those wonderful family and friends.
Very convenient for government.

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Have written to all and sundry re visiting my husband but no-one wants to know. All I receive is what I call 'Politicians' answers'. In other words nothing of any substance and no resolutions. I am afraid our loved ones are at the bottom of the pile. I've been told by Minister in charge that there is nothing in the pipeline for lifting restrictions on visiting. I don't know how much more I can take.

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To all family members caring for your loved one at home, please do get help via your local dementia crisis team or your local council social services. We did not know about this help available and had been struggling with the effects lockdown and a traumatic hospital stay had on my dad's dementia.
Since having this contact, we have been able to access support, guidance and starting to organise respite care for my mum.
No-one had given us any information as to what assistance there is, even the weekly phonecalls from the crisis team to my mum to check how she is coping were such a relief as we felt so alone trying to deal with the day to day challenges dementia has.
Research dementia crisis team for your local area or your local council social services to discuss direct payments for some respite care.
Don't deal with it all on your own ❤

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Sorry but I have no confidence in our local mental health facilities. My partner was diagnosed with Alzheimer’s over 3 years ago and is deteriorating quite rapidly and can’t be left alone to ensure his safety. Since his diagnosis he has had 2 visits to a consultant and 2 home visits from a mental health nurse. We have heard nothing at all for nearly two years now. My partner is 80yrs old, I am 76 and suffer from Crohn’s disease and two other conditions which affect the bowels and his sole carer.
I know these are difficult times but surely someone should be checking up on his care and needs.
My opinion of care for people on the dementia spectrum is very low and in need of a serious shake up.

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Brenda, I really feel for you and can relate to your experience, dad was diagnosed almost three years ago and apart from initial classes straight after diagnosis, there was nothing from doctor or anyone.
It took a phonecall in absolute desperation for help to dementia crisis team (based at our local hospital) to find out that my mum as my dad's carer can get help for respite care. We have just started with a care agency for two half days a week to give mum a break, this was awarded by local council/social services.
Please do call your local council/social services regarding direct payments so you get some support, they will not reach out to you. Also research if you can your local dementia crisis team, they were our first point of call and were like angels! We still have a long way to do with my dad's care but have made small steps and don't feel so alone.
I wish you all the best and please do reach out and get the help you and your husband deserve❤

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I moved my mum in with me during lockdown. She had been diagnosed with mixed dementia last September.
I’ve had many changes made so she has a ground floor bedroom and have subsequently given up tenancy of her flat, clearing it out and my house so I could bring some of her stuff here.
So far, no help from Social Services or anyone else.
I try to see friends and family as much as I can She really comes alive when she sees her grandchildren and great grandchildren so make every effort to keep seeing them.

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Joan my mum moved into her care home last October. It was hard then but much harder now we cannot touch her or even see her at the moment, following another lockdown. Mum’s dementia is quite advanced so we have no idea how long she has left on earth but she tells us often she feels all alone in the world which is heartbreaking. I think people in care homes have been abandoned by the government and policy makers. Mum seen her husband everyday and me or my siblings visited in the afternoons too. To go from this level of interaction to zero is intolerable.

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I feel relatives should be tested for Covid as mum is in her Care Home and then perhaps we could visit her and give her a hug. I feel desperately sorry for her having had no physical contact with her since March. I feel they were forgotton about right at the beginning of the virus. They need physical contact shecserms a lot worse in the last few months very sad

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