Calls for testing of relatives of care home residents with dementia

'We are failing care home residents and families - this cannot keep happening.'

Alzheimer’s Society Cymru is calling for action from the Welsh Government to allow visits to care homes by giving family carers key worker status and regular testing.

The charity is asking the Welsh Government to work with Local Authorities and Care Home providers to design a framework that allows visits but also allows care home managers to protect staff, residents, families and carers. 

In a recent meeting of the Cross Party Group on Dementia, family members and unpaid carers expressed their concerns about the current system and said that not being able to visit their loved ones is having a negative impact on everyone involved.

Kevin Jones, from Wrexham, cares for his partner who is living with dementia, Parkinson's disease and epilepsy. She has been a resident in a local care home for three years.

Prior to the pandemic, Kevin used to visit his partner at the care home every day.

He said: "Whilst visiting in March, the care home manager spoke to me and said that I had to leave as the home was going into lockdown. I tried to explain to my partner that I was unsure of when I could see her next, but she just didn't understand.”

“That would be the first time in 30 years that Jean and I have ever been separated - we’ve always been together.”

Kevin added that after the first lockdown, he made an appointment to visit Jean at the care home but was told that he ‘was only allowed to stand outside her bedroom window’.

He said: “I can only communicate by shouting through the window at her. My partner is receiving palliative care and needs hoisting into a chair to allow staff to bring her to the window.”

 "I've asked staff if I can be allowed to sit next to her and hold her hand, but I have been told no. I still go every Sunday to see her, but honestly, it leaves me in tears every time as I can't touch or speak to the woman I love.”

“Every week when I go, I’m just hoping and praying that she will look at me. When she looks at me I can see the light in her eyes, the recognition in her eyes, the love that she has for me in her eyes.”

“I find myself crying every time I visit, and it is having a hugely negative impact on my own wellbeing and mental health seeing the decline in my partner, and not being allowed to hold her.”

Sue Phelps, Director of Alzheimer's Society Cymru, said that there are many people in Wales in the same situation as Kevin and something needs to be done about it. 

She said: "The evidence heard by the Cross Party Group was devastating and heart-breaking. Seventy per cent (70%) of people living in care homes have dementia and the lack of visits from loved ones is taking a huge toll. This cannot carry on.”

"We must give family carers key worker status and the regular testing and personal protective equipment they need to allow safe visits. The impact on the wellbeing and mental health on people with dementia and their loved ones without it is too big a price to pay."

Wales’ Health Minister, Vaughan Gething discussed the issue in a recent press conference. 

The Health Minister said:  “People living with dementia, whether the person who has dementia or their family, their carers and their loved ones, this has been a particularly difficult period of time because you have these competing difficulties of both wanting those people to be kept well and safe and at the same time understanding that the value in that person’s life is even more tied in to seeing regular trusted loved people.”

“I want to get to a position where we can understand what we’re going to be able to do to make visiting not just accessible but as safe as possible to make sure that people don’t come to even greater harm. But this is one of the more difficult questions that we’ll continue to face in this unfinished pandemic.” 

In an official statement the Welsh Government said that it recognised how difficult the period had been for people in and around the sector.

“We understand how difficult it is for people to be separated from their families and loved ones, often for months at a time," a spokesperson said.

"We also need to do all we can to keep people living in care homes safe from this highly-infectious virus. We have seen that once coronavirus gets in to a care home it can quickly infect residents and can be fatal for many.

“We have updated guidance to enable care home visiting to take place, based on the situation in each local authority area. Routine testing of all care home staff is continuing and we are working with partners across the UK on the development of new testing technologies, including rapid testing lateral flow devices.”

Anyone affected by dementia can contact the Alzheimer’s Society Dementia Connect support line on 0333 150 3456 or call the Wales support line on 0300 222 1122.