Age UK warns progress in resuming care home visiting is stalling and calls on everyone to pull together to make it happen

• Charity publishes new report revealing just how devastating the suspension of visiting has been for many older people and families

Age UK says it is worried that many older people living in care homes will not be reunited with their nearest and dearest by Christmas, as the Government has pledged, unless something changes fast.

The Charity issues this warning as it publishes a new report, “Behind the headlines: why in-person care home visiting must get going again”, which lays bare the intense suffering experienced by many older people and their families and friends as a result of their enforced separation throughout much of the pandemic. Age UK says this shows it is vital that care home visiting happens again in person, as widely and as quickly as possible. The Government’s latest guidance says allowing visiting should be the default in every care home unless it is unsafe there because of a COVID-19 outbreak, and Age UK agrees this is the right approach. However, reports suggest many families are yet to be reunited, with no hope immediately in sight.

To inform the report Age UK carried out a snapshot survey of 2732 people with which it is in contact, meaning that the study was not representative. Four in five (81%) of the people who responded had a loved one living in a residential or nursing care home. The other one in five (19%) were residents of care homes or nursing homes, or people who live in or who have a loved one who lives in supported accommodation. The survey was open from 23/10/20 to 09/11/20.

The key findings[i] from the survey include:

• 70% said that they had not been able to visit or see their loved one since the start of the pandemic.
• 34% or one in three said that they had been offered no alternative to in person visiting, such as a video-call
• Nearly 70% of those who said they had been unable to visit their loved one since the start of the pandemic, also added that digital and phone communication was not a good alternative to in person visits in their case
• 45% of family, friends and residents who had been able to visit each other during the pandemic, said that seeing their loved ones in person was vital because their loved one couldn’t use digital options.

A key theme that came through the findings was how terrible many families felt because they knew that their loved one would not understand why they weren’t visiting them, and would feel abandoned and unloved. This was a particular fear when the older person in question was suffering with dementia.

In some instances, underlying feelings of acute guilt because of having agreed to Mum or Dad, husband or wife, going into a care home had been brought painfully back to the surface by the circumstances created by the pandemic. Others said that their loved one had always been frightened that living in a care home would cut them off from their family, making them lonely, and that now this was happening they felt to blame, even though it was not their fault. All these feelings were made worse by the realisation that time was not on the side of many of the older people.

The report contains many heart-rending quotes from respondents:

“It is bad enough having to have had the need to put a loved one in a home. With lack of contract and unable to take them out for visits home and contact with family , especial grandchildren it is even more guilt to contend with. Life is passing us by, time that can never be retrieved. I don't want mum to die away from family a thing she has always dreaded and I promised would not happen.”

”I feel as though I have locked my parents away and thrown the key away”

“I feel terrible, like I have deserted my mum”

“I feel so very sad, tearful, I miss my hubby so very much we’ve been married 49 years I want to see him and be with him, I used to visit daily and this is torture for me and him!! He has Huntington’s disease and at the end of his life I’m sure this will be his last year”

“Although we speak on the phone [my husband] is confused about why I'm not there and tells me all the time he just needs to see me.... He went into care during lockdown, so I feel lonely and almost as though I am a widow grieving even though I am not. The pain of it all has been unbearable”

“As a much loved Aunt who has no children of her own, we are her direct family. She also has a very wide circle of friends who would also like to visit. She has vascular dementia and does not understand the process of a video call. Every time she turned her head from the screen she thought I'd left her and she became very anxious. I've asked family and friends to send me photos so I can send them to her. She doesn't understand the photos the way I had hoped she might.”

“My dad is totally deaf and I have to use a white board to communicate due to his hearing aids being lost! It’s so difficult communicating with him and not being able to give him a cuddle or hold his hand is difficult. He’s 95yrs old with dementia and prostate cancer.”

“It's cruel and unfair to keep me apart from my 94yr old blind mum when l don't know how long she's got left. She's extremely lonely and depressed and is definitely losing the will to live”

An especially sad section of the report focuses on the awful situation of those whose relatives died in care homes, whether of COVID-19 or from other causes, without the opportunity to say goodbye.

“I was his support for 60 yrs and was not able to say goodbye at the end - I know in my heart that no one else is to blame but still feel as though I had no closure. Lots of people must feel the way I do and I am deeply sorry for them all.”

“My grandad was going to die, we knew that it was only a matter of time. But the fact that he might have died thinking we abandoned him kills all of my family. And it probably will do for the rest of our lives. I’m only 23 and I would hope I have many years before me. But this will always be a sad thing for me”

“My husband was in residential care when lockdown was suddenly implemented. The last time I saw him, we high fived and said see you soon. He died 7 weeks later. We never saw each other again.”

“I had a mother in residential care, but sadly she died on 9th September. She had mild dementia, and I think she just gave up. She stopped eating and drinking. From March until she died we only saw her the final 2 weeks.”

Against the backdrop of these deeply upsetting findings Age UK is calling on everyone involved in social care – central and local government, care home managers and staff, local Directors of Public Health – to ensure that in person care home visiting gets going again now and that this really does become and remains the default position for the rest of the pandemic.

Caroline Abrahams, Charity Director at Age UK, said:

“Now that the Government has said that visiting should take place in care homes unless a local outbreak makes it too unsafe it’s really important this actually happens.

“Our new report demonstrates a depth of suffering among all those care home residents and families kept apart by the virus that’s tough to read about, let alone experience. Our hearts go out to the hundred of thousands caught up in this tragedy; it’s clear that for some, their sadness and despair are almost unbearable and in the case of families left behind following bereavement, something that is likely to stay with them for the rest of their lives.”

“Most of the families who responded to our survey had been unable to see or speak to their loved one for the best part of a year. Now visiting is supposed to be happening again it’s crucial that the Government's pledge is delivered; every day counts and we know that for some it’s already too late.”

“It’s extremely disappointing that even with the Government’s new guidance encouraging in person visiting when the right precautions are in place many older people and their loved ones are still waiting to meet up, with no hope of that changing particularly soon. As one barrier is overcome another always seems always to take its place, whether it’s the pronounced risk aversion of some care home chains and their insurers, or a lack of confidence in Lateral Flow Tests among some local authorities.”

“Meanwhile, while these debates go on, far too many older people and their families are stuck in limbo, agonising over whether they’ll ever see each other again. For their sake above all we call on everyone involved - central and local Government, care managers and staff, and local Directors of Public Health, to pull out the stops to get in person visiting up and running. Meeting their loved ones again is the Christmas present many older people in care homes and their families crave, a gift beyond compare."

Notes to Editor

Additional stats

• 87% of family, friends and residents who’d been able to see each other during the pandemic told us seeing their loved ones in person meant they were reassured about their loved one’s wellbeing
• 85% of family, friends and residents who had been allowed to visit during the pandemic, but didn’t feel the visit was handled well, told us they weren’t able to interact with their loved one like they needed to
• 78% of family, friends and residents who had been allowed to visit since the pandemic told us they weren’t allowed physical contact with their loved one

Link to the report “Behind the headlines: why in-person care home visiting must get going again”

https://www.ageuk.org.uk/globalassets/age-uk/documents/reports-and-publications/reports-and-briefings/care-in-crisis/behind-the-headlines_in-person-care-home-visiting-decemeber-2020.pdf

[i] Age UK – Care home visiting survey analysis