Tony and his wife Pauline, who has dementia and lives in a nursing home, were kept apart for over three months because of coronavirus. Even as the Government opened care homes to socially distanced visits, these types of visits don’t suit Pauline’s needs, nor do they acknowledge Tony having key worker status to support her care.
Tony Claydon bristles with pride and love when he talks about his wife, Pauline. They have been married for over 49 years.
Pauline, who has young onset Alzheimer’s disease and now lives in residential care, first showed symptoms in her late fifties.
During lockdown, they were kept apart for over three months. There should have been so much joy as the Government announced that care homes could open to visits, if done safely and with the guidance of the local authority.
Sadly, this isn’t working for families like Tony’s. His wife’s care home allows social distanced visits, but these types of visits don’t suit Pauline's needs.
'I worry about Pauline all the time now'
Tony has been supporting Pauline for twelve years and is her most dedicated advocate. He would help her with everyday tasks, such as feeding and drinking.
Tony used to visit Pauline almost every day, but he wasn't allowed to be with her throughout the coronavirus lockdown that began in March, this year. The care home didn't allow access to anyone except healthcare professionals.
Pauline had a stroke four years ago. Currently, she cannot walk or talk and is blind in one eye. She needs to be manually turned in the night, and a hoist is required to help her from bed. Tony is the only person Pauline really responds to.
Tony says, ‘During lockdown, I was really worried about Pauline. I worried that she would feel alone and that she wouldn't understand what is going on. I know she hasn't been eating as well as she normally does. I worry all the time about her.'
Families need to be able to stay in touch
Despite some technical challenges, Tony managed to place some video calls to Pauline with help from care home staff.
These were some comfort to Tony, as Pauline responded to his voice and gave him a signal to say she could hear him. But he says those reactions were only occasional and became fewer as the weeks under lockdown passed by.
He believes that hard pressed staff simply didn’t and still don’t have the time to give the personal attention to residents that relatives can. And that 1-2-1 care is vital for resident’s’ quality of life.
'Socially distanced visits don't work for Pauline, or me'
Tony was given key worker status as his role in Pauline’s care is considered vital. However, this hasn’t made a huge amount of difference, and socially distanced visits are not a solution.
‘I am not allowed to hug my wife or give her any of the personal care she needs from me. I am restricted to having to keep three metres from Pauline when I do visit.’
Pauline is unable to raise her head and can’t engage with Tony without the power of touch. He tells us that visits are therefore 'emotionally painful'.
“When will my key worker status be recognised?”
Tony knows that at first people were asking to “see” their loved ones, but he believes it is more about needing to “be with” loved ones for the sake of their wellbeing.
He told us: “When I ask the care home why my key worker status isn’t acknowledged so I can be near Pauline, I am told that they haven’t had the go ahead from government which doesn’t make sense. That’s why Alzheimer’s Society’s calls to local government are so important. Visits should be implemented with consideration to individual needs.”
Fighting for change
National guidance announced in July advised that local government should work with care home providers to establish safe methods to reopen to visits from loved ones. The guidance says visitor policies should also consider the specific and varying needs of individuals. This doesn’t appear to be happening, keeping so many families affected by dementia disconnected.
We have developed key recommendations that we need local authorities to take into account when supporting care homes to reopen so that families like Tony’s can be connected.
Our key recommendations are:
Family or close friend carers must be seen as equal partners in the wellbeing of each resident.
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 are vital.
Active consideration must be given to understand on what basis residents should have more than one more designated family visitor to meet their individual needs and that is appropriate to family circumstance.
‘I seriously think there is a chance that the last time I helped Pauline, before the lockdown, could be the last time I ever touch her.’
People affected by dementia have been worst hit by the coronavirus pandemic – facing devastation at home, in their community and in care homes. The effects of the outbreak cannot be undone, but action can be taken to better protect people now, and in the future. To make this happen, urgent solutions must be put in place to better protect, support and connect people affected by dementia during the pandemic.
Alzheimer’s Society have secured a parliamentary debate on the shattering impact of Covid-19 on families affected by dementia. We have shared thousands of lived experiences with government, but you can also make sure your MP represents you.
Government must take urgent action
Help us maximise MP engagement in our upcoming parliamentary debate by writing to them to ensure they take part.