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.

View email and send

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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61 comments

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My mum has been in a care home since Oct 2019 suffering from alzheimer's mum tested positive for covid on Friday 6/11 and put immediately on end of life care which meant that the family could visit for the 1st time since March. I have asked lots of questions which the home can't or won't answer as to why mum was sent to hospital on the Tuesday before her positive result last Friday, who put her on end of life care? The fact that she is not eating is that because of the infection or is it that she is unable to swallow which would point towards end of life. I cant believe that these decisions with the doctor was made via a zoom call. The care homes believe that they have all the power and the government have enabled them in this belief. It needs to change!!!
My mum suffering with alzheimer's & lews bodies was sent into hospital on her own lonely , frightened & scared. The kind doctor at the hospital asked me to come and sit with my mum as she shouldn't have been on her own. With DOLS being in place I have a fight on my hands to remove my mum from the people who are holding her hostage.

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My mam in a.care home too I never been able to see my mam since the cov19 she has dementia I phone her day and night when I get in from work. But she can't understand why I am not there in person she's does not even know who I am she's not even going too no me. She's 92. I need to see her and let her no that I am still here for her I hope you can stored this problem out for me please help me to get to see my mam

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My mother is nearing the end of her life in a Care Home with Dementia. She does not know me, sleeps a lot, bed bound, taking sips of water no food. But the manager will no allow me to sit with her. Who knows how long she has left i feel the manager is playing God in stopping me go in & sit with my mother.

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Hello Cheryl,

We are so sorry to learn about your mother's condition - this must be such an upsetting time.

Please know that our dementia advisers are available on 0333 150 3456 if you need any support and advice: https://www.alzheimers.org.uk/dementia-connect-support-line

Wishing you all the best during this difficult time.

Alzheimer's Society blog team

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I agree with every one who has made comments on this site well done to you all for your honest views ,my mum is also in a care home and I feel selfish saying my heart is breaking that I can see her or touch her hug kiss ,I’m told all the time by telephone that she is fine ,but that’s not enough for me ,I need contact and I know she does , it’s cruel keeping them apart from those who love them dearly, xxx

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Get me tested!
Please can I continue to look after my elderly Mother as I have always done for many years seven days a week for a minimum of seven hours a day prior to lock down before I lose the will to live alongside all the elderly!

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My mum had a stroke and was forced into a nursing home by the hospital. She was suposed to be reviewed in March and due to lockdown has been dumped like a piece of rubbish. Mum lost her son during lockdown and the Care home Manager decided she couldn't attend his funeral. I'm so angry why is it ok to leave my mum to greive Alone! Mums deteriorated so much she will never go home now, she's had no rehab no input from anyone for 10mths now. Care home cant even be bothered to charge mums mobile phone and have never provided video calls. Something must be done to give these local authorities and care homes the Power to do as they please. OLDER ADULTS LIVES MATTER.

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This is so distressing. It’s barbaric. I don’t understand why the visiting parties cannot be tested for Covid. What is governments concern? I truly don’t understand these rules.

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I agree with all that has been said in previous comments . I would even go a stage further and suggest that it is not in the interest of many Care Homes for the mangers to let relatives in to see the reduced level of staffing they are employing at the moment. At my mother’s care home they advised last week that the approved staffing ratio is 1 nurse per 6 people with 1 Carer per 8 residents. Can this be correct? I pointed out that with 8 residents there may be as many as 3 who are two handlers for any nursing or personal care issues which would leave the nurses station unmanned and telephone unanswered; alarm or movement sensor calls by other residents unanswered In a timely manner ; and any staff monitoring of other residents in lounges etc during those periods. There must be more that can be done to put pressure on the government not to abandon this section of the elderly population who are trauma survivors in residential care homes. It was not my intention to abnegate responsibility for my mother’s care and I would willingly be tested weekly and wear protective clothing to be able to visit her and contribute to reducing her loneliness; fear; anxiety and increasing her feeling of wellbeing.

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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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