Relatives desperate for close contact are campaigning for people with dementia in care homes to be able to see family and friends safely.
Since last April, Alzheimer’s Society has campaigned for people with dementia in care homes to have meaningful visits from relatives or friends who provide vital support. Window visits, excessive use of PPE and perspex screens aren’t practical for so many people living with dementia, who need to hug and hold hands with visitors.
We joined other organisations as One Dementia Voice to call for family carers to get key worker status, with COVID-19 testing and visiting rights.
Our supporters – people like you – contacted your national and local elected representatives tens of thousands of times to share real-life experiences and concerns.
While guidance for safe visits in Northern Ireland and Wales had been announced, we secured a debate at Westminster in November to discuss just how important family and friends are in the care of people with dementia.
The government agreed to pilot a care visitor scheme in 20 care homes in south-west England, and we recommended how visits would work best. In early December, updated guidance set out how care home residents in England could be reunited with their loved ones.
Before many people were able to take advantage of new visiting guidance, stricter measures were reintroduced, ending in a return to lockdowns across the UK by early January.
Sarah-Jane Whitfield, whose mum has Alzheimer’s, managed just one close-contact visit at Crossways care home in Sutton, south London before restrictions tightened again.
‘I cannot begin to tell you how emotional and amazing it was to see my mum after nine months,’ she says Sarah-Jane. ‘She doesn’t recognise her grandchildren or friends anymore, just me. I was able to hug her and sit with her, and I have been able to paint her nails and do some colouring with her.
‘Now the government states I cannot visit even though I was having a COVID test. I have grieved the loss of my mum even though she is alive, and now I am grieving all over again. I’m devastated. My mum may forget who I am. I feel I have abandoned her.’
Risk versus actual harm
Some relatives haven’t even been able to enjoy a single face-to-face visit. Sharing his experiences on our online community, Talking Point member Stefan has described his devastation at being apart from his partner of 35 years. He’s only been allowed window and garden visits, which haven’t been very appropriate.
‘She is my best friend and we did everything together, but now we’ve been forcibly separated for 10 months,’ says Stefan. ‘I still have no idea when I will be able to see her again properly – it’s an endless nightmare.
‘The longer this endures, the more harm is being done, not just to the imprisoned care home residents but also to those who love them. Not only is there no perspective on the risk versus actual harm being done, but there is no evidence of any empathy, understanding or common sense in those who have the power to change the situation.
‘Mine is just one small story among so many about the myriad and devastating emotional impacts of this continuing, inhumane visitor lockout.’
Kepplegate offered indoor, socially distanced visits for relatives as early as June, and has been facilitating close-contact visits since December, using COVID testing. These continued in mid- January after relatives approved the home’s latest safety measures.
‘Maybe we’ve been gutsy, but to us the risk of malnutrition, dehydration, isolation and loneliness outweighs the COVID risk,’ says Adam. ‘If a visit is person-centred, it can boost a resident’s mental health.
‘It’s been fantastic to show what’s achievable and what can be done.’
Adam will keep on campaigning for people to stay connected.
‘I’m proud to be championing a way back to normality in care homes,’ he says. ‘Visiting should be the right of every family carer, period.’
The fight continues to make sure people living with dementia in care homes have meaningful visits, and for guidance to be implemented properly.
Fiona Carragher, our Director of Research and Influencing, says, ‘The government must do everything it can to keep people in care homes safe from the virus, but must act with compassion to prioritise meaningful visits continuing in a safe way, allowing residents to have the one thing that matters most.’
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