Dementia Diaries and other good ideas
Updated: Jun 11
Don’t let whatever you can’t do interfere with what you can do!
Dementia Diaries are just one example, among many, featured in a webinar from Livability
called 'Dementia Inclusive Church – workshop resources and ideas' which took place this week.
Dementia Diaries is a UK-wide project 'that brings together people’s diverse experiences of living with dementia as a series of audio diaries. It serves as a public record and a personal archive that documents the views, reflections and day-to-day lives of people living with dementia, with the aim of prompting dialogue and changing attitudes.'
The scheme enables people living with dementia to record their thoughts using mobile phones or landlines. The website also explains how 'some people also use our 3D-printed mobile handsets, which are customised to be as simple as possible, allowing us to both record audio diary entries and capture thoughts and experiences as they occur.
'These handsets are linked to a dedicated voicemail and as soon as a diary entry is recorded, it is automatically sent via the internet to the editorial team at On Our Radar. The team will then listen to it, transcribe it and curate it for publication.'
The aim is that 'by opening up our lives to the public we will improve understanding of the diverse experiences of living with dementia and how communities and services can best offer support'.
The project is supported by DEEP, the UK Network of Dementia Voices, which 'engages and empowers people living with dementia to influence attitudes, services and policies that affect their lives'.
Anna Chaplaincy has been following the growth of Memory Church in Leigh-on-Sea, Essex, for some time. One webinar participant, the author Jennifer Bute, recommended Memory Church, saying, 'Their services are on YouTube, and include visuals, slight repetition, familiar flowers and songs with words.'
Jennifer Bute's own website is called Glorious Opportunity, reflecting her positive attitude towards the condition and the spiritual insights living with dementia has given her over the years: www.gloriousopportuity.org
When Words Fail
Kathy Berry, joining the discussion from Richmond, Virginia, USA, recommended the book Dementia-Friendly Worship: A multifaith handbook for chaplains, clergy, and faith communities (Jessica Kingsbury Publishers, 2019). 'While providing resources to help create dementia-friendly faith communities and dementia-friendly worship experiences, it also contains many inspirational contributions from people living with dementia voicing their faith.'
Kathy has written a book called When Words Fail: Practical ministry to people with dementia and their caregivers (Kregel Publications, 2019). It contains practical ideas for clergy, lay ministers and caregivers about caring for spiritual needs through different stages of dementia,
At the website When Word Fail, she said, 'You can find a set of videos, a seminar you could show at your churches for people wanting to offer caring and compassionate ministry. The seminars, and a companion workbook, are free for you to download.
Spiritual Elder Care
Meanwhile, Alice Post, in Calgary, Alberta, Canada, recommended the Spiritual Elder Care website, which has dementia-friendly resources for Bible studies, worship services and hymn files, written by chaplain Elisa Bosley.
In response to coronavirus, she has adapted by putting her songs onto a YouTube channel and has also creating a music-filled weekly service.
Loving through Dementia
Likewise, Sheila Welch from Maryanna, Georgia, USA, shared her website, Loving through Dementia.
Sheila details how 'there are abundant resources for both those who are loving someone through dementia and for those who are living with dementia, as well. Our home page provides our free guide for families: Still Standing: A guide for loving through dementia and related dementias. It offers a basic understanding of dementia, answering questions and concerns.
'Our Action Plan offers thirteen ways for churches and communities to better minister… to better love families facing dementia. Many free resources are provided, including Begin A Support Group: A step-by-step guide.
Back in the UK, Lichfield Diocese is renowned for its wealth of resources for churches wanting to be more dementia-friendly.
There's a 'fridge worksheet', to support people in assessing what’s important to them.
And an article about coronavirus which might be helpful at this time.
Anna Chaplaincy was also highlighted by several webinar participants, both for the usefulness of this blog and for BRF's Messy Vintage, which has its home within Anna Chaplaincy for Older People.
Jennifer Bute and Beverly Moore from Kendal, Cumbria, spoke warmly of BRF's Bible Reflections for Older People (Jennifer is a contributor to these reflections), as well as the variation on the theme of Messy Church called Messy Vintage, which is tailored specifically for the needs of older people.
Beverly, whom I met when visiting Cumbria Churches Together just before lockdown, visits care homes with her church's children's worker, and takes six to eight children along for craft, activities, singing, prayer and chat. 'People will get involved, even those who don't get involved with the more churchy services,' she said. 'There are mutual blessings across the age gaps.'
Those keen to know more about Messy Vintage will be pleased to hear BRF is publishing a book with 52 Messy Vintage sessions later this year and, meantime, there are several Messy Vintage session plans you can download on the Anna Chaplaincy website.
The little things that count
All sorts of simple ideas emerged during the discussion which each person can do to show love for their neighbour living with dementia.
As participant, Su shared:
'Don’t let whatever you can’t do interfere with what you can do!'
Jennifer continues in the mission field of her retirement village near Bristol. She’s discovering a ministry to the dying and their relatives. She visits and offers the Leprosy Mission A Bouquet of Blessing books, giving the resource, then waiting for feedback. She’s also giving cards, scones, flowers in a jam jar left at people's doors – 'an act of caring, rather than being specifically spiritual!'
Babs Lowes in Barrow-in-Furness:
Babs’ church has put postcards through every door in the community – support cards which ask what people need. The church has a signposting file for carers and people with dementia, it contains Livability and Alzheimer’s Society resources and points to local community opportunities. In this time, she’s thinking that in care homes they’ll hold Celebration of Life services for when residents have been unable to attend funerals. Prayer cards, laminated (so they are cleanable), plus a tea light, are given to each member of staff – 'to say thanks and that they're being prayed for'.
David Pitkeathly in Carlisle:
David’s church are also doing simple things – making phone calls, a parish and wider community support group, aimed at beating isolation. Alzheimers Society has a local Singing for the Brain group which is now online, but he pointed out that access to the internet is not always easy.
And finally… some thoughts to spur us on
'We go on learning to the day we die, that is why we need each other.' – Jennifer
'Being known as someone you can disclose a diagnosis to is important.' – Sheila
'The label isn't important, it's the belonging, feeling that you actually count. Not us and them.' – Mhari
'What do you want to be when you grow up?'
from The Boy, the Mole, the Fox and the Horse by Charlie Mackesy