‘We are failing care home residents and families – this cannot keep happening’ – Alzheimer’s Society and the Cross Party Group on Dementia comment on care home visitor guidance in Wales

As Wales exits its firebreak lockdown and moves into the next phase of the country’s Coronavirus response, Alzheimer’s Society Cymru and Lynne Neagle MS call for action from the Welsh Government to allow visits to care homes. 

A recent meeting of the Cross Party Group on Dementia in the Welsh Parliament heard evidence from unpaid and family carers about the negative impact that not visiting loved ones in care homes has had on them and their loved ones. 

Kevin Jones, from Wrexham, cares for his partner who is living with dementia, Parkinson’s disease and epilepsy. Kevin’s partner has been a resident in a local care home for three years, and prior to the Coronavirus pandemic, Kevin used to visit her every day, helping to keep their relationship strong, and allowing him to develop close relationships with the care home staff. However, that changed with lockdown. Kevin 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.

“I had to shield myself due to existing health conditions, and because I had previously lived with my partner, I was on my own with little or no outside contact during this period. I developed depression, anxiety and stress and was separated from my partner for five months.

“During my shielding, I had a call from her care home to say that she had contracted COVID-19. This shocked me greatly as I believed that the home was in lockdown and was a safe place from COVID. I am yet to receive an answer as to how my partner contracted COVID, although she has now recovered.  

“When I exited shielding, I made an appointment to visit my partner; and was told that I was only allowed to stand outside her bedroom window, 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. In the five months we have been separated her dementia has deteriorated so much that she doesn’t recognise me anymore.

“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. 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. Going home to an empty flat knowing she is stuck in that care home without me in the hardest part of the visit.”

Alzheimer’s Society Cymru and the Cross Party Group on Dementia are calling on the Welsh Government to work with Local Authorities, Care Home providers, the Third Sector and people living with and affected by dementia across Wales in order to design a framework that not only allows care home visits, but allows care home managers to protect staff, residents and families and carers.   

Sue Phelps, Country Director for Wales at Alzheimer’s Society Cymru, said: 

“The evidence heard by the Cross Party Group was devasting 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 as Wales’ Coronavirus restrictions ease from the firebreak.

“Alzheimer’s Society Cymru’s Dementia Connect support line is flooded with calls from families, worried sick about when they will see their loved one again and how abandoned they must feel, not understanding why they’re no longer getting visits or worst of all, that they will simply give up and fade away. 

“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.”

Lynne Neagle MS, Chair of the Cross Party Group on Dementia, said: 

“The evidence we heard from unpaid carers across Wales at the Cross Party Group was truly heart-breaking and fully showed the negative impact on the lives, and deaths, of people living with dementia and their families. The guidance issued by the Welsh Government has gone nowhere near far enough in allowing family members to visit their loved ones in care homes. This cannot just be left to individual local authorities and care homes. We call on the Welsh Government to urgently work with stakeholders to develop national ways of working to allow visits to happen in a safe environment.”

Alzheimer’s Society is here for anyone affected by dementia through its Dementia Connect support line on 0333 150 3456 (or call our Wales support line on 0300 222 1122). Alzheimer’s Society’s dementia advisors provide information and support on how to stay safe, active and social during this difficult time. Our phone lines are open seven days a week.