Philip visiting his mother, Sylvia

Care home visits during coronavirus: What does the Government guidance mean for people affected by dementia?

Visitor restrictions in care homes have been distressing for many people across the country, but especially people affected by dementia. We explain the government’s visitor guidance in more detail and what it means for families with loved ones living with dementia in care homes.

For many care home residents with dementia, family and friends provide more than just visits. They play a significant role in a person’s care, whether it’s interpreting their needs to staff, or providing personal care.

Regular family contact is also important for maintaining mental and communication skills. Visits are key to the health and wellbeing of a person living with dementia in care home.

The government published guidance for care home visits in England on 22 July. This is a step in the right direction for families desperate to visit their loved ones.

But it’s important that this guidance is being interpreted and implemented by local authorities and care homes in a way that works for people affected by dementia and those close to them.

What does the Government guidance on care home visits say?

The new government guidance sets out steps that local authorities can take, working with the care homes in their area, to enable visits to restart safely. 

The guidance recognises important factors, including:

  • The local coronavirus situation
  • The benefits to a person’s wellbeing by having visitors in person
  • The harm that might be experienced by the resident from a lack of visitors
  • The provisions and needs outlined in an individual’s care plan

The guidance also highlights the need for individual assessments if remote communication (such as video calls) or the recommended socially distanced visits are not working. This is very important for a lot of people living with dementia, as these visits are causing more distress or are not enough to allow meaningful interaction.  

How the guidance should work for people affected by dementia

We know many families affected by dementia are concerned about how visitor policies are being developed by care home providers. There is little understanding about what consideration is being given to the complex nature of dementia. There are additional concerns about how realistic socially distanced visits are for care home residents living with the condition. 

We have developed key recommendations that we need local authorities to take into account when supporting care homes to reopen safely. 

Our key recommendations are:

  • Family or close friend carers must be seen as equal partners in the wellbeing of each resident. Some care homes now have an ‘essential family carers’ scheme in place that recognises this.
  • Ways of staying in touch with care home residents must always meet individual needs, despite potential future periods of lockdown. 
  • Regular and clear communication with families about their loved one’s health and wellbeing is vital.
  • Active consideration must be given to ensure the limit on number of family visitors does not cause undue distress to the individual living with dementia, and that this is mitigated if necessary.

If these are implemented, we believe everyone living with dementia in a care home will be able to have visits from loved ones safely, in a way that works for them.

How should I talk to a care home manager about visits?

If keeping in touch through technology, such as video calls, is not working for you, then you could discuss meeting your loved one in person from a safe distance in an outdoor space. 

If socially distanced visits are not proving beneficial for you or your loved one with dementia, then government guidance recommends the care home works with you to provide appropriate PPE (personal protective equipment) for non-socially distanced visits.

Talk to the care home about the recommendation from government that, where visits are not working, individual assessments are carried out. Visits can then be adjusted appropriately, in a way that ensures the safety of residents and staff. 

With these measures in place, people with dementia in care homes can have visits from loved ones that are best suited for them. This can ensure the adverse effects of social isolation caused by lockdown no longer continue.  

What else can I do to influence care home visits?

It is also the responsibility of local authorities to make sure the government guidance is enacted in a way that works for all care home residents.

You can help ensure care home visits work for people affected by dementia by sending our briefing to your local Councillor, to make sure our calls are seen by the right people in your area.

Contact your local Councillor

Send our recommendations on care home visits to your local Councillor to the government guidance work for people affected by dementia so families can be better connected.

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Have you had, or are you soon to have, a conversation with a care home manager about visiting your loved one with dementia? Share your story with us by emailing our Blog team at [email protected]

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51 comments

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What is the Alzheimer's Society doing to address the restrictions on visits in care homes. My mother's care home has once again stopped garden visits and we cannot even go and see her at her window as they don't want families congregating outside the home. My mother has not been out for more than six months and we have not been in the home for more than six months, apart from a weekly socially distanced visit for 45 mins in the garden from mid-June to end of July. The impact on my mother's dementia and physical health and on the family is incalculable. I would expect the Alzheimer's Society to be a voice for people like my mother, local and national authorities are not listening to families.

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Hello Julie,

Thank you for getting in touch.

Alzheimer's Society is currently campaigning for local councils to undertake our recommendations (https://www.alzheimers.org.uk/sites/default/files/2020-07/Local%20Autho…) when carrying out risk assessments to re-open care homes and ahead of potential local lockdowns, so that families affected by dementia are better connected in a way that works best for their needs.

We implemented this campaign (https://e-activist.com/page/65258/action/1) following national guidance that gives local authorities the autonomy to work with care home providers in their area and support how they develop visitor guidance following local risk assessments. We are confident that our recommendations will ensure that families affected by dementia will be better supported to visit loved ones living in care homes.

We also campaigned previously for national guidance to improve contact between families and loved ones with dementia. This campaign (https://www.alzheimers.org.uk/news/2020-06-04/coronavirus-social-contac…) ran all throughout June, challenging leads of the daily press briefings to update on when guidance for care homes and home care would be available.

Our chief executive has led a group of dementia charities to call upon the Prime Minister and Secretary of State for Health and Social Care to give family members of people with dementia in care homes and the community as key worker status. Following our joint open letter (https://www.alzheimers.org.uk/news/2020-07-09/open-letter-secretary-sta…), we have been reassured that further guidance on this is coming and we remain in regular contact with the Department of Health and Social Care to hold them to account on this.

Finally, alongside Age UK, we co-chaired an advisory group for the Social Care Taskforce, for which we recently submitted recommendations for addressing many issues that people affected by dementia face as a result of COVID-19. One of these recommendations referenced the vital role of family and friend carers to care home residents living with dementia.

You can find out more about our coronavirus campaigning via https://www.alzheimers.org.uk/get-involved/our-campaigns/coronavirus.

We hope this helps.
Alzheimer's Society Campaigns Manager

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Are the regulations re care homes the same in Scotland?

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Hello Karen.
The government regulations for care home visits in Scotland may differ and change over time - please take a look at GOV.SCOT care home guidance on phasing in the re-introduction of visiting: https://www.gov.scot/publications/coronavirus-covid-19-adult-care-homes…
We hope this helps.
Alzheimer's Society blog team

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My Dad had to go into a care home in April. His vascular dementia was only slight then but, with all his other health problems, even two of us living with him could no longer care for him. We were all heartbroken at that point but felt we would soon be visiting him every day and continuing the love and care in a different way.

But the stress of the move and two weeks in isolation caused his dementia to explode. A couple of infections caused hospital stays and more isolation. Then he needed a special chair so had to stay in bed - yet more isolation. He couldn't read and lost interest in TV. There were no familiar faces for months. No-one to understand and advocate for him.

All the time he was deteriorating. And we discovered the home wasn't always following his care plan, initially they forgot his meds, they lost his things, they were sometimes rude and obstructive to family, they were too busy. We tried to build relationships with his carers and the management. Some were lovely and did their best but understaffing meant that promises were hard for them to keep. We had to pester them for health updates. There was even radio silence after we delivered two dozen cakes to help celebrate his birthday.

Eventually they allowed us two visits a week outside. They sometimes forgot to give him a blanket or coat. Phone calls and visits involved tears on both sides despite our best efforts to cheer him up. He continued to be very distressed.

He died a couple of days ago completely emaciated. We were allowed in the home to be with him in his final hours but he couldn't speak except to express that he was in pain. We had to fetch the morphine ourselves as they were short staffed and given less than an hour to get to the pharmacy which was some distance away. The nurse would not administer it until she had finished her round. At one point my sister was locked out during the night as we could find no-one to let her into the building. After nursing our Mum through her horrible death at home a few months previously, I could not believe the care home setting was even more stressful than that.

Someone else said here that care homes have no accountability at the moment. It's true. There are no checks nor witnesses. That, together with the government abdicating care decisions to organisations who are essentially businesses has left some of the most vulnerable people to a cruel existence and death. My lovely Dad did not deserve this. He worked hard, gave us a fantastic childhood, helped raise a lot of money for different charities, was always ready to help anyone. It is an absolute scandal how he and others like him have been treated.

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My mother-in-law has been in her care home since June 2019 . Family visited her most days and spent a lot of time with her. Family would take her to have her hairdressers fortnightly and chiropodist 4weekly. They’d take her out for lunch fortnightly on different days, which she loved doing and would ask when she was going out again. Since lockdown started in March she’s not had her hair cut or her feet attended to or any outings. When we’ve challenged the home they just refer to their policy’s regarding the protection of their residents from coved 19. Nothing about residents mental well-being.
There was no attempt for the first 2 months of lockdown to facilitate any form of family contact by phone or video call. When calls were made we were informed mum was not available. We are now allowed one garden visit a week for 20 mins wearing face coverings and socially distanced via a separating fence. My wife has not had any physical contact with her mother since January and they both get quite distressed when they see one another. I’m not sure how this is supposed to be helping my mother-in -laws health and wellbeing, more that it is detrimental to it. I feel the home is scared of what might happen not what will happen. More concerned about covid 19 that the greater wellbeing of their residents. What a sad and distressing way to spend the final years of your life.

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My husband is in a care home, we’ve been together 64 years, married for 60 years.
They have not let me touch him for 5 months.
I’m allowed 30 mins in garden 2 metres apart. He’s losing speech now.
I’m watched by staff and listened to everything I say to him.
They touch him all the time, it’s like a knife in my heart.
It’s breaking me. I want to get him home but it’s difficult to organise.

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So sorry Marian I fully understand your feelings I am in the same position. My husband cries and tells me he wants to come home. He has a DOLS on him that was done in Lockdown behind my back. A best interest meeting was also done inLockdown. The Homes have far too much power and control. It's breaking me too but challenge them it will make you feel better. Insist he comes home and organise it. Find someone to help you. Good Luck and Take Care.

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I used to see my husband every day since his severe stroke. His care home allows one hour every 2 weeks outside in good weather only. I can’t bear this. I am alone. When she wheeled him out I just broke down and sobbed I miss him so much. Seeing him 10ft away is so cruel when the staff member can sit next to him and he seems to barely know me anymore. This is surely a crime of cruelty which should stop. The people in care homes will always be in the vulnerable category so will they always be kept ‘contained ‘? It is breaking my heart.

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I to have my mum in a care home she has been there just over five years before all this I visited every other day , my feelings are just like everyone who has messaged on here! But what is even harder for me is I also have a daughter with Learning difficulties Who is in a residential care home she is 41yrs old and has always come home every other weekend ,just recently I have been able to visit in their garden but she loves hugs and I can’t give her one it breaks my heart. It is soul destroying To see two of the most important people in my life hurting 😔

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Hi i know how you feel. My son is 30 in a care home and he responds to physical contact and i can't hug him or hold his hand. The carers wear mask, so I cant see why I can sit with him with a mask on. It upsets me everytime I see him and is unbearable being so close but can't touch. I feel your pain and the homes need to give a little. It is not good for us or our loved ones.
Christine

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My husband John, who suffers with Alzheimer’s, was admitted to a Care Home in North Devon last December because I was very ill and in hospital in West Sussex where we live .My son took him to Devon where he lives because he knew John would get lots of visitors from the extended family who live nearby. My stay in hospital was much longer than anyone first thought and after 3 months I was eventually discharged at the end of March 2020, whereupon the country went into lockdown, thus all visiting for John ceased.
I have been taken to Devon once, a car journey of five hours , to visit John outside in the garden which was a very tearful experience for us both. We had 15 minutes together and after being married for 64 years we were not even allowed to hold hands. How can anyone with dementia even understand what is happening.?
The manager of the care home seems risk averse and even when I said “let me dress in all the PPE that you do” still she would not allow a visit inside.
If there is such a great risk it does not compare with the damage being done to his and my human rights. The Government must act to stop this cruelty going on.

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Thank goodness I found this blog. I honestly thought it was just me. I'm expected to talk to my mum through a 2 inch gap at the bottom of a double glazed window. Me standing in a car park. Her in a room full of distractions. If I can keep her attention for 10 minutes it's a miracle. Care home staff say it has to be this way. I feel like me and my sister are losing our mum. Why can't we be tested, self-isolate until results are through then visit face to face or take her out and sit on a park bench feeding the ducks!

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I have recently asked my Mum's care home owners to reconsider their very strict rules on visiting (almost none). They responded by threatening to evict my mum if I carried on complaining!!

My Mum has dementia and is effectively imprisoned within an upper floor of her care home. They have just introduced one 30min visit in the garden per week at >2m distance and wearing masks. Even these are cancelled when the weather is bad or when they don't have enough visiting slots. Furthermore, I am the only visitor she can have so the rest of our family can't see her at all! There are no hairdressers allowed and no chiropodists and absolutely no sign of anything changing in the foreseeable future. My mum's appearance has deteriorated and her blood pressure and anxiety levels have risen to unacceptable levels.

On a broader point, I genuinely think we are potentially facing the next national care home scandal. I recently realised that the care homes have almost NO external visitors going in. The CQC has suspended its inspections or does them over the phone; there are no external entertainers, no relatives and even the Doctors consult via telephone. How do we know what is happening if nobody is checking?

I've written to my MP and to the head of my local council. I've read Government guidance and there is an onus on care homes to consider the overall wellbeing of residents - it seems most of them are simply taking a 100% Covid approach and ignoring the other essential needs of people with dementia. My mum is 84, is in the final stages of her life and to lock her up with no face to face contact with her family is heartbreaking. If the staff can be trusted to enter with PPE then why can't relatives? We have offered to have regular covid tests (and to pay for them privately) but the home simply ignores us.
The situation is immensely distressing for us all and if we could care for Mum ourselves then we would do it tomorrow (this is something I am exploring as fast as I can!).

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Wow Nicola I really feel for you. I don't feel I'm ever going to see my mum again. I'm afraid to become "difficult " with the home as I understand how risk averse they have become. I feel like our relatives are being completely overlooked just as they were at the start of this pandemic.

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My daughter son and myself are longing to see my husband of 59 years. His care home have not allowed visitors since March. I don’t know if he understands why we have not been visiting. I wish somehow I could have kept him at home but I couldn’t cope.
If the home starts visits it will be only one family member how do we decide. I so want to see him my daughter and son too.
This is a dreadful thing to happen at this late stage in our lives. I think I may never see him again and I shed tears over this.

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After reading through the comments my heart goes out to all loving family members, I work in a care home and see the detrimental effects of the current so called pandemic, I am certainly not seeing this deadly so called virus. Dementia does not recognise covid, masks and visors are frightening to most it restricts communications, when helping a person to get up for the day, settling them down for a good night's sleep reassurance throughout the day/night when asking where their loved ones are, a friendly smile and a reassuring hug is often needed, not a pair of eyes and masks, gowns and visors. I have worked right through the so called pandemic and have not seen the death rates stated in the media. I am not saying covid is not out there. Im saying its not as deadly, people die everyday from other virused but they are not reported to the degree covid is being reported. it is cruel to stop family visits and not allow any physical contact with loved ones. Sadly people come to the end of life regardless. Care homes should be allowed to open up and allow proper visits no masks no 2 meter space between. My only concern is care homes are danmed if they do damned if they don't as should covid be bought into the home it would be a blame game. I unfortunately do not have my parents however after seeing how much of a negative impact this has had on mental health and well being I for one would sooner have the non restricted visits, allow physical contact and take whatever time I had left regardless. It has got to be better than little to no communication or contact.

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I agree with you completely Liz, my husband of 47 years is in a care home with vascular dementia, before the lockdown started I used to visit him every day from 2pm to 7.30pm, I'd sit in his room holding his hand , talking to him, hugging him, playing music for him, helping with the toilet, feeding him. Suddenly I'm not there, how must he be feeling, carers cannot give him the love I give him. The only contact I seem to have from the home recently is when he's fell or had problems with other residents. My heart is breaking thinking of him all alone with no affection from his family, what is the point in this, we might as well take the chance of him getting the virus because its killing him and our family by not having any physical contact. When they do a video call I can see how much he has deteriorated, i feel as if it is against his human rights and mine what they are doing. This could go on for years and the longer it goes on the more people with dementia will die without having any contact from their loved ones. A prisoner has more rights. Its evil the way the most vulnerable people in our society are being treated.

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It is my parents 74th wedding anniversary today. They both have dementia and have been in a care home together for 3 years. During that time I was able to visit them most days, for a cup of tea & a chat. Mum had a fall in April & fractured her leg, which unfortunately has left her bedridden. As she is so frail, the hospital said she was on Palliative Care, and allowed me to visit her every day in the hospital. Since she has gone back to the home I have not been allowed to see her at all. They are both in their nineties and I really don’t know whether I will get to see them again before they die. Surely this can’t be right.

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It's a disgrace, how dare they do this to you.

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It’s seems that Care Homes are free to do whatever they like. The government have issued guidelines that do allow visits in special circumstances. However some Care Homes have blanket bans on visiitors, even if we are prepared to wear full PPE. I don’t blame the carers, who are doing a fantastic job, but the Directors of these organisations need to be answerable to someone.

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I haven't seen my lovely mum since Feb this year, the home she is in has been tested twice and both times all have come back negative, which is great news, but on the other hand why am I still not able to visit her? when I ask the Manager this question it seems all about paperwork and politics, she informed me they have to send there tests results on a form to PHE, and then wait and see what they are told about Garden Visits, seems very long winded to me and even the Manager agreed with me on this, as their tests come back to them in dribs and drabs not all at once, which again prolongs the process, I talk to mum a lot on the phone as she can;t cope with anything else, and just be speaking with her I know she has deteriorated a lot, just need to see her with my own eyes, as this definitely does not help her mental state at all. She thinks we have all abandoned her, which is heartbreaking, they and we are definitely the forgotton people. Especially when I see on social media all the other people having garden visits throughout the country, should be the same rule for everyone to make it fair.

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This doesn’t seem right to me. My mum is in a care home too she has dementia. We are allowed to visit in the garden twice a week we have our temperature checked and are given a mask. It sounds good but not practical as the weather is unpredictable and each time I’ve been it’s been windy and too cold for mum as she comes out from a warm environment. They wrap her up with blankets she lasts about 10 mins. She has three of us all from different households so the 2 visits a week are challenging. I fear for the winter they can’t tell us what measures they’ll put in place for that.
Please stand up to your mums home you are entitled to visit.

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It’s a national shame how our elderly relatives have been treated during the coronavirus pandemic, my mum is 65 and has no capacity and as poor communication skills to use Skype, which we have tried and social distance visits in the garden have been nice and to see her in person as been lovely, but they not practical or beneficial ourselves as mum likes to walk around, she is very tactile and likes to be touched and hold your hand which is devastating for us as a family as each day is precious. there as to now be a balance between humanity and keeping people safe, infection rates in different areas are up but more testing is being done but hospital admissions are low, government are focusing so much on a second wave that little thought goes into much else, I have on 2 occasions asked to use PPE to visit mum which I can get sterile and better than what the staff are using and would gladly have a covid test once a week like the staff do? I don’t know why visiting a care home is becoming so difficult they are becoming like prisons!

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