Affected by dementia?

In Britain 850,000 people are living with some kind of dementia. 

Around 700,000 families are involved in supporting them, directly or indirectly.

That includes members of Emmanuel, of course, as well as others in our local community. It can be a very difficult experience for many.

What can we do as a church? 

The points below are to encourage us in our thinking and caring:

1. Welcome

Everybody belongs, whatever the state of their health, or their abilities. We are a loving community. Do we need to make changes at church to make sure all really feel welcome and at ease?  

Let us know if you have suggestions.

2. Friendship

‘People living with dementia are persons. They are looking for a sense of attachment, belonging and identity. They need to feel comfort and inclusion.’ 

So relationships are important. Feelings continue when cognitive ability may have declined – pleasure at being visited, or anxiety in new surroundings. Family, friends, churches and community groups have a vital role in providing love, friendship and support – for the caregivers too.

That isn’t always easy. We may feel ill-equipped and unsure how to relate; what help we could offer; afraid of making mistakes.

Living with dementia, and caring for a person living with dementia, are strange situations. The disease may come in stages: sometimes not noticeable at all. There may still be a certain stigma to acknowledge it openly. At what point do we speak about it? There are no rules; like any relationship it needs respect and sensitivity. 

Similarly, giving practical help doesn’t always seem straightforward. What can we offer and when? People may be reluctant to ask for help, or even to acknowledge their situation.

But we can be more open and intentional. Don’t wait to be asked, but find out what will be helpful – from food to financial matters, health issues, going for a walk, transport, and more. 

Caregivers need our support too. They can feel isolated. Some may be squeezed between an older parent to visit and the younger generation at home.

See below for some suggested practical actions.

3. Faith and hope

Faith can be severely challenged by the experience of dementia. We can share faith and hope, forgiveness and prayer.

The Gospel reminds us that we are persons, made in God’s image. We can go on believing that the person is still there, still loved by God, and remembered by God, whatever the impact of their disease. The Gospel assures us of God’s presence when we suffer and gives us hope beyond what we can see, because our relationship with God continues. We can demonstrate this through continuing and strengthening our loving relationships.

4. Supporting those in care homes

We already have a link with Alexandra House, where some of the residents, including Emmanuel members, are living with dementia. 

How could this be strengthened?

5. Support groups

Some churches have support groups for people living with dementia and caregivers. Some also offer a simple monthly worship service, while others have open lunches or cafés.  Would you be interested in such a group? What kind of activities would you find helpful?

If you have suggestions or questions about anything written here, please get in touch with any of the following:

Operations Team: operations@emmanuelwimbledon.org.uk

Women’s Ministry Team: wmteam@emmanuelwimbledon.org.uk

Robin Thomson: robinthomson1@gmail.com

Resources :

Basic training:

A new course has just been produced. Please contact the Operations Team if you are interested in signing up. 

If there is sufficient interest then we will provide further details of when this will happen.

You can find out more about this from the description below, or at

https://www.embracingage.org.uk/supporting-carers-course.html

Books:

Finding Grace in the Face of Dementia; John Dunlop, Crossway, 2017

Living with Alzheimer's – a love story, Robin Thomson, Instant Apostle, 2020 (with annotated list of helpful books)

Communicating Across Dementia: How to talk, listen, provide stimulation and give comfort, Stephen Miller, Robinson, 2015

Websites:

Embracing Age resource list: https://www.embracingage.org.uk/dementia.html  

Carers Connected: https://www.carehomefriends.org.uk/carers-connected.html 

Faith in Later Life: https://faithinlaterlife.org/

Anna Chaplaincy: https://www.annachaplaincy.org.uk/

Dementia Friendly Church: https://www.dementiafriendlychurch.org.uk/

Practical actions that will almost certainly be welcome :

• Organising a meal rota, as appropriate.

• Visiting. This could be to spend time with both, which would be welcome. Or it could be to release the caregiver to do something else or go out.  It’s common for the person living with dementia to be so dependent on them that they have little or no time for themselves. Giving them that time could be like gold.

• With the person living with dementia: be yourself and relate normally. You may need to take more initiative to direct the conversation or activity, for example games, photos, songs on an iPad or singing together. Music is powerful.

• When visiting isn’t possible, it might be a phone call, letter, email or video call. For some this will only reach the caregiver – but that’s well worthwhile. A friend used to phone me regularly, just to ask how things were going.

• Caregivers have another important need – somebody to talk to in confidence, to share feelings and pray. I met our vicar every three weeks and it was a lifeline.

• Some appreciate help to continue attending a group they belonged to, perhaps by taking them. Zoom may be a poor substitute but can work for some.