Many churches across our Diocese have actively supported residential care home, year in year out, with people from church both visiting and leading worship regularly. Residential care homes involve a community of residents and relatives, and staff – and Care home communities have been particularly impacted by Covid-19 restrictions.
Kate Lee, the CEO of the Alzheimer’s Society, in a blog post on Tuesday 21 July, said, “People living with dementia across the UK have been hardest hit by coronavirus, with over 1 in 4 deaths those of people with a dementia diagnosis. We know that despite the incredible efforts of care home staff, the sector was largely ignored by Government during the first part of the crisis with devastating consequences. Families have been separated from loved ones for months and there is evidence that those with dementia, living in both residential care and at home, have declined significantly faster than expected, with social isolation a major factor in many carers and people living with dementia’s lives.”
The impact of visiting restrictions
Recent government guidance says that care homes can now accept visits from close family – and recognises that lockdown has been difficult for many residents and families over the past few months and that visits are important for all those in care settings. We’re in touch with care home staff who are working really hard to support residents and relatives as they meet together again. We have also heard first-hand experiences, over the months since lockdown began, of the massively tough impact on residents and relatives of not being able to see one another in person. In an Alzheimer’s Society blog posted on 10 August 2020, John Amos explains the impact of not being able to visit his wife Lesley every day as he would usually do: Lesley lives with dementia and is a resident in a care home.
“My wife, Lesley, and I have been married for 45 years. When she was diagnosed with dementia, I looked after her at home for as long as I could. When she moved into a care home, five and a half years ago, I still visited her every day to chat, have meals with her and give her additional care. But when coronavirus hit, Lesley’s care home went into lockdown and I didn’t see her at all for more than eight weeks. Going from seeing and caring for Lesley every day, to complete radio silence has been so difficult... Eventually, I have been able to see her for socially distanced visits in the garden, which I was hopeful about. But these are really hard for both of us… It’s now been five months since the care home first locked down, and it feels like there is no end in sight. When someone has severe dementia, five months is such a long time... I understand the manager needs to keep the home safe, and I am happy to be tested and wear PPE to keep everybody protected. If I did that, I would be no more risk than the carers in the home... It’s having a huge impact on both me and Lesley, and I would do anything to be able to see her properly again. Like many people, I was eagerly awaiting the Government’s guidance on care home visits, which was published last week. Unfortunately, this doesn’t seem to have made much difference to us yet, and our visits aren’t changing much.”
John’s Campaign, founded in 2014, asserts the right of people with dementia to be supported by their family carers: “carers should not just be allowed but should be welcomed, and... a collaboration between the patients and all connected with them is crucial to their health and their well-being.” John’s Campaign blog posts have been highlighting the “deterioration in mental and physical health among many residents” because of visiting restrictions. In a letter to the Secretary of State at the beginning of last month, John’s Campaign, The Alzheimer’s Society, Dementia UK and others highlighted the huge contribution of family carers: “They not only provide practical services that contribute directly to their family member’s well-being, but also act as their advocates, voice and memory, keeping them connected to the world. We have heard countless stories of the anguish that both the residents (who may feel bewildered and abandoned) and their anxious family carers have experienced. What’s more, without these essential family carers, the cognitive abilities of a person with dementia can deteriorate rapidly, and this enforced isolation from family and friends can be fatal. The sharp spike in excess deaths in care homes since the pandemic began is not just caused by the virus; there has also been a significant rise, 52%, in non-coronavirus-related deaths for people with dementia.”
A positive step forwards – MHA’s new policy
MHA, the UK’s largest charity care provider, has just produced a new booklet, “More than just a visitor: A guide to Essential Family Carers”. It’s a real step forwards. As the MHA booklet says:
“We recognise how complex relationships between our residents and their families and friends can be. Because of this bond we appreciate how difficult this time has been for you and your relative living in a care home. We really are thankful for how you, as a family member or friend, have supported our colleagues during the pandemic and we want to continue working positively with you over the coming months. We have been working with you to ensure that your connection with your relative has been maintained either through technology or more recently through outdoor visits. However, we also recognise that we need to go further in relation to visits, in particular for those residents who were receiving significant support from a loved one prior to lockdown and have struggled as a result of this. With the release of the recent Government guidance in relation to visiting we have been able to introduce our Essential Family Carer scheme for residents who have been prioritised as needing essential support from a family member.”
Who is counted as an 'Essential Family Carer'? “A resident’s family member or friend whose care for a resident is an essential element of maintaining their mental or physical health. Without this input a resident is likely to experience significant distress or continued distress.”
John’s Campaign worked with MHA to produce this booklet and (in its blog post dated 9 August 2020) John’s Campaign recognises 'More than just a visitor' as a 'potential game-changer'. “This formal recognition of the essential nature of individual loving care shows that something at least, has been learned from this uniquely painful period as we move on into an uncertain future”.
Signposting care homes and families on to 'More than just a Visitor'
Why not share 'More than Just a Visitor' with the care homes where you’ve got connections, as well as with families whose relatives who are living in residential care? Other care homes may wish to use this foundation as they formulate their own approach.
As always, if it would be helpful to have a conversation about this, do get in touch with me on 07982 248949 or sarah.thorpe@lichfield.anglican.org