"She is going to wither away until she doesn't know who we are": Concerns grow over the wellbeing of dementia residents in lockdown

Liz Stothert can't see her own mum who lives in Orchard Homes' Penwortham Grange, Martin Field Road, due to local lockdown restrictions. She is living every day in fear that the next time she will get to see her, will be when she has finally forgotten who she is.

She spends every day fighting her cause to see mum June, who has 'rapidly deteriorated' in lockdown. Answering the phone to her mum is becoming a harder task for Liz, who hears her cry and confess she feels 'abandoned'.

"My worry is that we will still be in this same situation in December. My mum has come to us every year at Christmas for as long as I can remember and I am scared that we will still be in a position where we still can't see her," says Liz.

"Care homes now need to be looking at individual residents and their circumstances to decide whether to allow visits or not. Some elderly residents will have always been without close family and friends and may be used to it, so this situation is no different to them. For my mum, she was used to us taking her out every week and keeping her stable and happy.

"For me, they are not doing enough to help me see my mum. They have had time to plan for having visitors and prepare a safe environment, because they still didn't allow me to see her before the coronavirus cases in Preston started rising again. There are a number of rooms with external doors on, they could let us see her outside. They are not thinking outside of the box and looking into ways that they could make this work."

Liz claims that the Penwortham care home, that falls under South Ribble and therefore is exempt from the Preston lockdown restrictions, could introduce perspex screens and ask for proof of negative Covid-19 tests for her to be able to visit her mum, who has battled dementia for three years.

"My mum has always had a lot of contact with us to keep her happy and keep her brain stimulated and now it has gone to nothing. Care homes need to be looking at individual circumstances because I am so worried for her mental wellbeing. The only chance I get to see her is through her bedroom window where she can't hear us and doesn't properly understand what is going on, it is absolutely heartbreaking.

"We've been led to believe that the only chance I have of seeing my mother at the moment, is when she is only given a few days left to live. Dementia doesn't wait for anyone and the nature of the illness means she will be confused and not know who we are. That is the cruel thing about it, because she is already forgetting who she is speaking to when she calls us. It is just awful to think that she is just going to wither away until she doesn't know who her family is or where she is."

When the Post contacted Orchard Homes, that manage Penwortham Grange where Liz's mother resides, they declined to comment.

Lancashire County Council's head of adult services says the authority will look into drawing up guidance on care home visiting, amid concerns about the effects of isolation during the coronavirus pandemic.

"People are just withering away - particularly [those] with dementia," County Cllr Graham Gooch, told a meeting of County Hall's internal scrutiny committee.

"It's incredibly harsh - we're getting to the stage where the cure is worse than the disease."

He said that he had asked Lancashire's director of public health to investigate the matter.

Current guidance from Lancashire County Council stated that “care homes should not facilitate visits to residents from friends or family in care homes, other than in exceptional circumstances" when Preston’s local restrictions were tightened on August 8.

The heart-wrenching reality that dementia residents are faced with was witnessed first hand by registered nurse Carley Stewart, who quit her Preston care home job after seeing residents 'loosing the will to live' and being 'stripped of their human rights.'

She says: "The mental state of residents, especially those with dementia should outweigh the risks of catching coronavirus. A family member wearing a mask is much safer than them being isolated and allowed to deteriorate the way they are doing.

"We take risks every day in our lives by just getting in cars or crossing the road. I worked with patients living with dementia who were told every day, for five months, that they couldn't see their loved ones and couldn't go outside or spend time with people. It was heartbreaking.

"Not letting them see their families is clearly detrimental to their brains because without contact and stimulation your brain dies and this is what is happening. I could no longer work at the care home knowing I was going along with these guidelines and seeing people in the condition they were in. They are still people and they still have emotions and feelings. They rely on us so to take that freedom away from them is horrible."

More than 110,000 welfare calls have been made to people living with dementia who are suffering from loneliness during the pandemic, it was revealed by the Alzheimer's Society.

Gavin Terry, Head of Policy at Alzheimer’s Society says: “Regular visits from family and friends are an absolute lifeline for people with dementia in care homes. Our research has shown four in five people have seen their dementia symptoms get worse during lockdown, and our Alzheimer’s Society Dementia Connect support line has been flooded with heart-breaking calls from people whose loved ones are fading away while their care home remains locked down to visitors.

“Local risk of coronavirus is an important consideration, but so is a prolonged period of social isolation, where people’s condition can deteriorate rapidly. We’re urging local councils to balance both of these risks when considering reopening their care homes. We need to see regular testing of designated family carers so they can come to care homes safely.

“People with dementia have been worst hit by the pandemic, making up a quarter of all Covid-19 deaths, and locking down care homes indefinitely could be extremely damaging. We can’t be sure how long coronavirus will be with us, so we must prioritise good dementia care in this new reality.”

Nadra Ahmed OBE, Executive Chairman of the National Care Association says: "Care providers are in a very challenging position as their primary responsibility contractual is to keep their residents and workforce safe at all times. During these unprecedented times, they are required to upgrade all risk assessments for every individual, their family, the impact on their workforce and other residents for every proposed visit in order to comply with government guidelines.

"The balance to maintain family contact and keeping the virus out of care services is an unprecedented challenge and I know providers are doing all that they can to support loved ones as much as they can."