Coronavirus and dementia

We’re all facing challenges in this heightened season, as Coronavirus brings huge change to the shape of everyday life for all of us. Some of this is particularly acute for people affected by dementia, including isolation and loss of the usual structure that gives a shape to the week. 

So how do we keep connections?  Here are some things that have been going on, around the Dementia-Friendly Churches Network in recent weeks.

Pre-diagnosis

For some people, the impact of memory loss or confusion has been accentuated with the removal of the usual social connections. Conversations with family and friends can be really important. A recent conversation led a daughter, supporting her mother, to read Oliver James’ 'Contented Dementia'. Although there’s no confirmed diagnosis of dementia, the daughter found

“it was such a relief to… explain so clearly what has been happening and to provide so many excellent tools for addressing the issues that have been causing so many stresses. I have already adopted the three main rules (Don’t contradict, Don’t ask questions and Learn from the expert) and in and of themselves they have turned our visits and conversations from a low level battleground into a much more peaceful and fruitful place… [The book has] given me a route map out of a tangle of fears and worries that were becoming overwhelming”. 

It’s vital that we keep listening to people’s experiences locally, sharing understanding that may help to give a “route map”.

Dementia-Friendly Churches Certificates – continuing with renewals

We’re continuing to renew Dementia-Friendly Churches Certificates: some churches are glad to use the opportunity of a renewed Certificate to share ways of keeping connections with people affected by dementia, through challenges of lockdown. Here are the actions that one church has signed up to, renewing its Certificate this month:

1. To support those with dementia and their family members or carers during the time of Coronavirus restrictions by:

• Regular phone contact;
• Providing access to our weekly electronic mailings, videos and music (whether people are church members or not);
• Working with the Memory Service to support any individuals in particular need; and
• Offering strong support to those who are recently bereaved.

2. To maintain contact with all our Residential and Nursing Homes and provide emotional and spiritual support for residents, staff and family members during Coronavirus restrictions.
3. To build rapidly on these connections once restrictions are lifted.

For other churches, we’re agreeing actions now and we’ll reissue the Certificates when churches open again: we can have a discussion and work out what’s appropriate for your church. 

Church groups for people with dementia

Until church groups for people living with dementia can meet again, people are keeping connections in various ways.  Phone calls are important, keeping in touch over the weeks – and for some people it’s been helpful to arrange regular phone calls on different days of the week, to keep frequent connections. For one group, on the day of their regular meeting a pack containing a tea bag, a biscuit and a blessing is delivered to each members of the group. For another group, they’re using the “anchor” the song and same four prayers that they’ve shared month by month over more than six years and they’ve also created a collage of hands affirming their continuing connection – you can see it in the picture at the top of this blog.

Care Home connections

Some staff and residents in care homes have been facing a devastating time on the front line. There are deaths to embrace; and we’re aware of staff living with both physical exhaustion and real heart-stretch, as they navigate a path through. There are also real challenges for relatives who are unable to visit. How are connections being made?

• Phone calls can be really important, for residents and for relatives – and also for staff if they need a listening ear.
• On-screen link-up with family is working for some residents and sometimes it’s been possible to visit 'outside the window'.
• Some residents have really appreciated hymns and videos from local churches.
• And any 'connections with the outside world' can be really significant – cards, pictures from children, Easter eggs, gifts of toiletries.
• One church helped check about the need for PPE for staff and toiletries for residents.
• An activity co-ordinator who was running out of things to do has been lent resources by a local church dementia group; and resources for VE Day celebrations have been shared.
• For any living with bereavement, this poem 'Tis a fearful thing', written in the 12^th century, acknowledged the mystery of life and death. Also, the charity Cruse (helping people who are bereaved), has a booklet on 'Bereavement, loss and dementia' that may be helpful in giving support to people living with dementia and those close to them, through the grieving process.
• Please continue to hold care home residents, relatives and staff in your prayers. 

Darkness and light…

We all need space for both lamentation and celebration: that’s never been truer than it is now, as we all live through the impact of Coronavirus. With dementia, there needs to be space to acknowledge the cost and challenge it brings, naming all that’s being let go of; and there also needs to be space to affirm life, each step of the way, noticing the light shining through even as patterns change. George Rook, whose blog is called 'Living with dementia as well as I can', posted a blog a few weeks back entitled 'Stay in the light', talking very honestly about both darkness and light: I wonder where you are finding space both to lament the challenges of this present time and/or of dementia and to celebrate the gift of life/connections, which you may find in unexpected places. 

Join the conversation? Better together…

Clive Rogers, who lives with dementia, encourages us along: “I’m ex-military.  I’m used to putting up with whatever.  It’s just another thing. It’s one of our sayings in the military: Learn, Adapt, Overcome. Find little things to occupy yourself.  I’ve got some painting by number. I do an hour a day on that. There’s things to occupy us on iPads. And I pop out into the garden. We’ve arranged Zoom on-line meetings for our DEEP [Dementia] group once a week on a Friday. I won’t get in a corner and curl up and die. I’ll get on with life – live life as best I can. If people want to call, we’re really open to calls to support one another.” And his wife Barbara adds: “It’s not going to be forever. We are going to get through this. We’ll really appreciate all getting together again. You find ways round it. We won’t take hugs for granted in the future.” Clive and Barbara are both happy to speak to people: let me know if you’d like to arrange a conversation with them. 

You are welcome to join the conversation – sharing any questions / responses / thoughts by email sarah.thorpe@lichfield.anglican.org or by phoning me on 0798 224 8949. If you use Facebook, you can join the conversation there: www.facebook.com/dementiachurch/  And we’ve got some Dementia-Friendly Churches Network meetings coming up in the next few weeks on Zoom: details are coming round in a Newsletter and you’re welcome to be in touch if you want details of the dates and times to join in with these meetings.

Sarah Thorpe
Dementia-Friendly Churches Enabler
Diocese of Lichfield
sarah.thorpe@lichfield.anglican.org
0798 224 8949