‘I’m convinced the isolation hastened my father’s death’
Did the sudden end to visits for dementia patients result in thousands giving up? Lauren Libbert reports
Kelly Molloy’s father, Mike Palmer, died five weeks ago and she’s convinced social isolation combined with dementia and Covid played a big part in his death. A former sports journalist, Palmer, 75, had been living in a care home in Whitstable, Kent, for 18 months when Covid-19 struck. The home immediately went into lockdown and all family visits were suspended.
“My dad had broken his hip and was wheelchair-bound but my husband, daughter and I would normally visit at least three or four times a week and push him out for fresh air, by the sea, to eat some fish and chips,” recalls Kelly, 50, a teacher from Herne Bay in Kent. “When we had to stop visiting, I was so worried he’d think we had abandoned him. Those thoughts still plague me.”
Kelly tried calling her dad on the phone but the calls were distressing.
“He sounded so much more confused and didn’t even know who we were, which wasn’t like him at all,” says Kelly. “Although dementia took his memory away, he was normally very articulate and had a hilarious sense of humour and was always keeping the nurses on their toes with his banter. He was very tactile too and loved a hug. But Covid changed everything.
“He went from seeing people all the time to seeing nobody unless they were dressed head to toe in PPE. He was someone who loved a comforting hand and a smiley face, but the lack of proper contact and conversation clearly had a devastating impact on his mental state.”
About two weeks into lockdown, there was a confirmed case of Covid in the home and it wasn’t long before Kelly received the call she dreaded: her father had a high temperature.
“He deteriorated after that in a matter of days,” says Kelly. “I was allowed in to see him twice, both times dressed in full PPE, and I held his hand and tried to reassure him but he just lay there and didn’t wake up.”
Kelly received a call on the evening of April 29 to say her father had died.
“Covid did go on the death certificate but as there were no tests available at that time, no one knew if he actually had it,” says Kelly. “I’m convinced the lack of contact over those few weeks accelerated his deterioration and was a contributing factor to his death.”
Palmer sadly joins the vast number of dementia sufferers who have died during the crisis. In England and Wales, according to the Office for National Statistics, dementia was the most common pre-existing condition found among deaths involving Covid-19 in April.
Genes play their part too, with a recent study from the University of Exeter and the University of Connecticut showing that people with the APOE e4 gene variant, which is closely linked to Alzheimer’s, having a higher risk of contracting severe Covid-19.
But dementia deaths, for those not tested for Covid, were also significantly higher – 83 per cent – than this time last year, which translates to nearly 10,000 unexplained “extra” deaths.
A survey by the Alzheimer’s Society suggests a possible cause, with 79 per cent of the 128 care homes surveyed finding that lack of physical contact and the end of family visits was causing a deterioration in the health and wellbeing of their residents with dementia. “The direct deaths from Covid are fairly easy to understand but there are so many excess deaths which are harder to explain,” says Tim Beanland, head of knowledge at the Alzheimer’s Society. “With dementia, we know it’s so important to stay
physically, mentally and socially active. A good care home is a lively place with a lot going on, but Covid meant residents were often zoned into one section with all the usual activities withdrawn. Access to health services and GPS, especially at the beginning, were also limited.
“Add to this the lack of family visits and scary-looking PPE and dementia sufferers can become depressed and even stop eating and just ‘give up’ – all leading to a higher mortality rate.”
Julia Jones, co-founder of John’s Campaign, which was set up in 2014 to campaign for the right of people with dementia to be supported by family carers, believes that the disconnection and isolation as a result of the Covid shutdown is causing huge amounts of suffering.
“If your brain is being attacked by this illness, the way to keep connected is by the support of your loved ones and family,” says Jones. “No one can replace that connection with a spouse, say, of 50 years who is really special to that person. Staff can look after the physical aspect of care but family looks after their wellbeing and that connectedness is profound.”
Jones believes that relatives should be part of the solution – even in the time of pandemic – and can even support care homes when they’re under so much stress from staff absences. “The portcullis effect in care homes has been devastating and there should be more thinking around how to let visitors in, otherwise, these tragedies may continue,” she says.
Mike Lowe, 67, lost his 92-year-old mother, Dorothy Lowe, to Covid on May 6 and still struggles with the fact he wasn’t able to see her for the last two months of her life.
“The home locked down very early – around March 10 – and we tried doing Skype calls but her dementia meant she couldn’t understand what was going on,” says Lowe, a former defence electronics engineer who lives in Edinburgh. “I used to visit her every day and push her by the Union Canal and she had lots of visits from friends – and liked her white wine – which always made her a little brighter. When Covid came into the home, they had to keep her in her room and I know they tried to do their best but the lack of stimulation must have been very hard for her as the care home was shortstaffed. I felt helpless.”
Lowe ended up having to rely on
‘No one can replace that connection with a spouse of 50 years who is special’
regular updates from staff, who, one day, informed him that his mother’s breathing was laboured and she later tested positive for Covid.
“I was told she was unconscious and it was too hazardous at that stage to go in, so when she died two weeks later, it felt completely weird. It still feels like she’s just gone away on a trip,” says Lowe.
Mike Padgham, who runs four care homes, including St Cecilia’s Care in Scarborough specialising in dementia care, agrees it has been a very challenging time. “We have been trying our best but our sector has been ignored for more than two decades,” he says. “St Cecilia’s is cosy, warm and friendly but it isn’t set up for social distancing and doesn’t have much space so we need more investment to modernise if we are to live with this vicious virus long term. We’ve had to reverse isolate in our home, as some dementia residents like to wander and it’s impossible to restrict them without causing distress. We know how vital family visits are but we’re caught between a rock and a hard place. We don’t want to restrict freedom but we also don’t want to run the risk of introducing the virus. Are we doing the best we can? I don’t know.”
In an attempt to find a solution, The Alzheimer’s Society has put together a team of experts to support the Government in their planning.
“Doors can’t stay closed forever,” says Beanland. “It’s making the mental health of dementia sufferers worse. We need to find a way forward.”
In the meantime, John Anderson has found a unique way of keeping in touch with his mother, Eve Anderson, 91, who suffers from dementia and currently can’t see visitors.
Pre-lockdown, John would visit his mother at her care home – MHA Belvedere in Colne, Lancashire – most mornings with his dog, Bronte, where they’d join a few ladies in the canteen and play games and chat. After the home was shut down, John tried video calling his mother but it was too distressing.
“Mum was getting very upset and would say, ‘why aren’t you coming home? I’m going to die of a broken heart’,” recalls John, 66, a retired PE teacher. “So now my daughter and I write a letter by hand to her every day and include photos of what we’ve been doing and the staff say she loves them and to keep them coming.
“It’s nowhere near as good as visiting but it’s the best we can do. I just hope we can get back in and visit again soon. She really needs it.”