Stuart and Barbara’s story

Since July 2020 we have been conducting a study on Coronavirus and Dementia in care homes. We want to understand what’s going on in care homes and nursing homes. We want to find out how care staff are coping in these unprecedented times and what help and support would make a difference to them.

Staff who are working with people with dementia during the current pandemic have shared their experiences. Some took pictures, some took part in an online interviews and discussion groups, some wrote a post for this blog. We wanted to get the full picture of how Covid-19 related restrictions are affecting dementia care, so we invited our Experts by Experience to take part in the study. Three of them got involved. They told us how it feels being a relative of someone living with dementia in a care home, during a pandemic.

Today, 16 November, a pilot scheme will be launched to allow family and friends of people living in care homes to get access to regular testing, which will allow them to visit their loved ones. This pilot, unfortunately, will only initially take place in 20 care homes across Hampshire, Devon and Cornwall. This is a very welcome change in approach according to Alzheimer’s Society but could have come too late for some. “We worry it is too little too late for the desperate families who have been waiting eight months to visit their loved ones”, commented the Charity.

In this personal account, Barbara shares her thoughts and worries about not being able to hold hands and reassure her husband with her presence, during these months.
This is the first of a series of posts about the Coronavirus and Dementia in Care Homes study. More will follow in the next weeks. If you wish to share your story or if you have any questions about this research you can email Giorgia Previdoli


‘To all those friends in our group that have partners in care like I have, I thought sharing our experiences during Lockdown might help one another.


My husband Stuart has been in care for two years now and until the start of Covid, I visited him every day at lunchtime to help him get a good dinner. Since Lockdown, I have been able to see him once a week through his bedroom window. On two occasions I have had an outside door visit where I was on the path and he was sat in the doorway behind a table with a carer sitting next to him ( making sure I did not touch him). It just felt like a prison visit – not that I have ever had one. It is just soul destroying, I come away every time devastated, I just can’t stop crying seeing him there isolated being kept in his own room.


How scared must people living with Dementia be – never seeing a friendly face, everyone hiding behind a face mask?. I can’t help wondering what must be going on in Stuart’s mind, does he think I have abandoned him? I hope not!! It is terrible not being able just to sit with him, hold his hand to reassure him, to laugh with him and to smile at one another. What breaks my heart is that Stuart knew me before lockdown, but I don’t think he does now, that precious time has been taken away from us.


Now in the second Lockdown we have not been able to see them at all – not even through the window. The virus cannot travel through glass so why should we be denied this? I wish the people making the decisions knew what heartache they are causing people like Stuart and myself.


I honestly believe unless you are in the same situation as we are in it is difficult to understand what a catastrophic effect this virus is having on families who have a loved one living with Dementia.


I do hope that some of you are having better experiences than me and that you are able to have more quality time with your loved ones.


I look forward to hearing from anyone about their experiences, and if you have any thoughts on how we could make things easier for relatives to see one another.
How great it will be when we can all meet up again soon.”