The Christian Council on Ageing (Charity No 289463)
has a website www.ccoa.org.uk where details can also be found.
The Christian Council on Ageing Dementia Group was founded in 1990 with Dr Bob Baldwin (Consultant in Old Age Psychiatry, Manchester) as chair. He was followed by Professor John Wattis (now visiting Professor of Psychiatry for Older Adults at Huddersfield University) and the Group is currently chaired by Dr Daphne Wallace, retired Consultant in Old Age Psychiatry, Leeds.
We are a network of people who came together initially because we shared a common concern that people with dementia were often not being regarded as persons with the same rights and spiritual needs as any other person. We have sought to promote a person-centred approach to the care of people with dementia. We are always pleased to welcome new members who share our concern.
The core group meets twice a year, generally in York, to exchange ideas and information and to plan activities. We have organised two major conferences in York and Durham, together with a number of smaller regional events. Our members often speak at conferences organised by other groups.
Our major achievement has been to set up and manage two dementia projects. The first three-year pilot project was based in Newcastle upon Tyne and completed in 1998. This project researched and produced resources for anyone involved in the care of people with dementia. The project aimed to promote a broad understanding of spirituality which could effectively include everyone.
The second project, also based in Newcastle, and completed in November 2000, aimed to provide help and advice to anyone who has a responsibility for providing holistic care to people with dementia - of all faiths or none. Work undertaken included evaluating the resources produced in the earlier project, developing links with other faith communities, and collaborative working with other agencies and with the growing number of Dementia Services Development Centres.
Whilst based in Newcastle, the Project had a nationwide remit.
Our current focus is on networking and facilitating contact between people with ideas and experience in the area of spiritual care for people with dementia and their carers. The individual members of the Group have a wealth of knowledge and will continue to make this available to anyone wishing to initiate work in their local area. Contact the address below if we can facilitate this or provide a speaker.
Annual report 2005
The Dementia Group continues to be in good heart with excellent attendances at its twice-yearly meetings in York and we have been pleased to welcome several new members this year. Once again our main focus has been on networking and facilitating contact between people with ideas and /or experience in the area of spiritual care in relation to people with dementia.
We have as members of our Group people with a wealth of varied experience and knowledge which we continue to make available to anyone wanting to initiate work in their own area of the country or looking for a speaker on the theme of spiritual needs and dementia. Our main means of making connections between people and also informing them of initiatives in other parts of the country is our twice yearly Newsletter and we are always pleased to receive articles and information to include about initiatives, meetings or publications of relevance. It is an encouragement that we send the Newsletter free to a mailing list of 350 and received nearly £400 in donations to assist with this aspect of our work.
We have discussed the various statements by the National Institute for Clinical Excellence (NICE) concerning the drugs Reminyl, Aricept, Exelon and Ebixa. Many people testify to the improvement in quality of life and capacity for communication people with dementia experience whilst taking these drugs and we share the indignation of the Alzheimer's Society which stated that 'NICE seems to have concluded that people with dementia are a group that it is not worth spending money on.' The battle goes on.
On a more positive note we were pleased that the new Mental Capacity Act has marked a major turning point in the legal rights of older people with dementia and their carers. People with dementia must in future not be assumed to be incapable of making their own decisions and carers will also benefit from new rights to be involved in decision-making processes. The Act also makes it clear that advance directives (living wills) are legally enforceable and introduces lasting powers of attorney which will enable people to donate powers relating to their health and welfare.
We have welcomed the publication of Lighting the Way: spiritual and religious care for those with dementia by Patricia Higgins (an associate of the Group) and Richard Allen (available from Alison Johnson, 33 The Plain, Brailsford, Ashbourne DE6 3BZ).
Another member of the Group Revd Susan Kirkbride has been responsible for two useful CDs Restoring the Soul - A selection of favourite hymns (price £6.00 plus £2.00 postage and packing) and O Tidings of Comfort and Joy - favourite Christmas hymns ( Price £5.00 plus £1.00 postage and packing), both available from 01786 467740.
Future plans include updating our website which one of our members Clive Baldwin is facilitating, completing arrangements for organising and storing our archives, reprinting two of our popular publications (Spiritual Care: guidelines for care plans and Frequently Asked Questions on Spirituality and Religion) and collaborating on a new booklet on dementia care chaplaincy with MHA Care Group and a book on dementia care written from the perspective of carers and people with dementia to be edited by Steve Curran.
Further information about the work of the Group is available on our website. If you would like to join our mailing list, purchase any of our publications or attend our meetings which are held on two Saturdays a year in York, please contact our Chair Dr Daphne Wallace, 15 Holme Park, High Bentham, LA2 7ND Tel: 01524 263136.
Alison M Johnson
If you share our vision of person-centred care for people with dementia and would like to become a member of the Group please contact the Chair (see Contact us). We offer three categories of membership:
A Full members who expect to attend our twice-yearly meetings in York on a regular basis and are generally members of CCOA (to join see their website http://freespace.virgin.net/mike.lowis/CCOA) They receive papers and minutes and the Newsletter.
B Associate members who are supportive of the work of the Group but not necessarily members of CCOA. This could include members of other faiths. They receive the Newsletter and minutes of each meeting to keep them in touch with the work but are not be expected to attend.
C Corresponding members who simply receive the twice-yearly Newsletter.
Newcastle Project Practice Guide Price £6.00
This guide published in 1998 is a record of the experience of the CCOA Dementia Group Newcastle project seen through the eyes of the Project Worker, Laraine Moffitt. It is intended as a handbook and survival guide to assist future projects.
Is Anyone There Video Price £15.00 including two booklets
This professional twenty-minute video is concerned with the spiritual needs of people with dementia and won an award for its producer Vin Arthey. It is designed to be used as a training aid which will promote discussion. It opens and closes with film of a carer and moves on to consider the meaning of dementia, spirituality and person-centred care. The booklets are Workshop Leaders' Notes and Guidelines for Worship and Prayer.
Spiritual Care: guidelines for care plans by Laraine Moffitt and Gaynor Hammond Price £2.50
This practical guide aims to help staff understand the nature of spiritual needs and how to consider them within the context of existing care plans. It contains an example of a completed care plan which lists daily tasks for staff and demonstrates how these can be carried out taking into account the body, feelings and spirit of the person being cared for.
Frequently Asked Questions on Spirituality and Religion by Jo Airey, Gaynor Hammond, Pam Kent and Laraine Moffitt Price £1.00
This useful booklet written by a group of project workers seeks to answer some of the questions about spirituality and religion and the relation between the two that have most often been asked of the authors. For example: What is the difference between religion and spirituality? Aren't spiritual needs the responsibility of the church or chaplain? Why does it sometimes appear as if churches let their members down when they move into residential care?
Religious Practice and People with Dementia edited by Brian Allen Price £2.50
This is a resource designed to assist those caring for people with dementia in understanding what might be of importance for members of five major world faiths: Christianity, Hinduism, Islam, Judaism and Sikhism. It contains a short summary of each religion, details of important customs and festivals and some prayers and readings that could be used with older people.
Dementia and Spirituality: an introductory reading list Price £2.00
This reading list does not aim to be comprehensive but should be of interest to those caring for people living with dementia and concerned about their spiritual needs. Available in hard copy or click here to download (pdf format, 81kb).
Dementia and Spirituality: an annotated bibliography Price £3.00
This is a considerably longer list of relevant publications intended for academic researchers. Available in hard copy or click here to download (pdf format, 134kb)..
Copies of any of these publications can be ordered from CCOA Publications, PO Box 403, Dorking, Surrey RH4 1SA enclosing a cheque payable to CCOA. Prices include postage and packing.
We publish our Newsletter twice a year in April and October. It is mailed free to nearly 350 supporters although we appreciate donations towards the cost of postage. To receive a copy send your postal address to the Editor at 33 The Plain, Brailsford, Ashbourne, DE6 3BZ
Dementia Services Development Centres (DSDCs) A Dementia Services Development Centre is an agency or organisation which exists to provide services and information in a specified geographical area on all aspects of dementia and dementia services. The CCOA Dementia Group has particularly close links with the Stirling DSDC, Dementia Voice, Dementia North and the South East DSDC. For further details see www.dementia.stir.ac.uk/network/network.htm
Faith in Elderly People, Leeds This is a local ecumenical group concerned with the needs, including the spiritual needs, of older people. Gaynor Hammond led a project especially about those with dementia and their carers. FIEP has also developed the Memory Box to help stimulate the memories of people as they grow older. Publications include A Daisy among the Dandelions (£2.50),The Memory Box (£1.00), The Friendship Club (£1.00), Holy, Holy, Holy: the church's ministry for people with dementia (£2.50) and The Wells of Life: moments of worship for people with dementia (£4.00) Contact Gaynor Hammond 29 Silverdale Avenue, Guiseley, Yorks, LS20 8BD.
Focolare Centre for Unity
Based in Welwyn Garden City and part of an international movement, inspired by God and working for unity in all spheres of life. A number of seminars take place at the Focolare Centre for Unity for all those involved in the care of older people or for older people themselves. For further information phone 01707 333694.
Revd Malcolm Goldsmith who has a long-standing interest in the spiritual needs of people with dementia, has himself published and promoted his latest book In a Strange Land: people with dementia and the local church (£14.95). Contact 34 Cumberland Street, Edinburgh EH3 6SA.
John Young Foundation
An ecumenical organisation based within the churches of Stafford and District but involving people from a wider area. It is concerned with the continuing work of promoting health , healing and wholeness in both its individual and corporate aspects. See www.johnyoungfoundation.org.uk
The Leveson Centre for the Study of Ageing, Spirituality and Social Policy
The Centre, which is open to those of all faiths and none, aims to be a local and national resource and to be an interdisciplinary centre for the study of ageing, spirituality and social policy, involving older people themselves alongside professionals, carers and church people in understanding the spiritual dimension of life. Relevant publications include:
Working with Older People : A Resource Directory for Churches 2nd Edition Details of over 100 church-related organisations working with older people (published in collaboration with MHA Care Group), 2006, £7.50 (in plastic wallet), £15.00 (in A4 binder)
Paper 4 A Good Death Papers presented at a Leveson seminar, 2003, £5.00 (includes a chapter on achieving a good death with dementia)
Paper 6 Dementia: Improving Quality of Life Papers presented at a Leveson seminar, 2003, £5.00
Paper 7 Older People, Faith and Dementia: twenty-four practical talks for use in care homes Chris Crosskey (published in partnership with Church Army), 2004, £6.00
Paper 8 Seeing the Person beyond the Dementia Papers presented at a Leveson seminar, 2004, £5.00
Paper 12 Palliative Care for People with Dementia Based on papers presented at a Leveson Seminar, 2006. £5.00
Revd Dr Keith Albans is Director of Chaplaincy and Spirituality, the Revd Margaret Goodall Dementia Care Chaplaincy Adviser and Elaine Robinson part-time Spirituality of Ageing Resources Officer.
In collaboration with the CCOA Dementia Group, MHA Care Group has produced two useful leaflets - Visiting people with dementia and Worship for people with dementia. The Halley Stewart Project co-ordinated by Revd Albert Jewell who was then at the MHA Care Group produced a series of booklets written to help individuals, local churches and other interested groups share a deeper understanding of the spiritual needs of older people. They include one entitled 'The Spiritual Needs of People with Dementia' For publications contact MHA Care Group, Epworth House, Stuart Street, Derby, DE1 2EQ, Tel 01332 296200. See www.mha.org.uk
Pastoral Care Project, Nuneaton This local project has produced a DVD Spiritual Care in Confusion (£15.00). It lays emphasis upon spiritual care and demonstrates that effective care of people with dementia requires the input of a multi-disciplinary team of professionals and volunteers with the contribution of family, friends and church being crucial. Contact Frances Molloy, Father Hudsons Campus, Coventry Road, Coleshill, B46 3EB, Tel 01675 434035
Psalm (Project for Seniors and Lifelong Ministry)
This is a small independent charity developing opportunities for continuing work and ministry by and for older people in London. It includes training programmes and seminars and a developing network of parish workers/volunteers. There is also a modest resource centre at St Pancras Church. Contact Ann Morisy, St Pancras Vicarage, 6 Sandwich Street, London WC1H 9PL, Tel 020 7388 1461. See www.stpancraschurch.org/
Chair Dr Daphne Wallace, 15 Holme Park, High Bentham, LA2 7ND Tel: 01524 263136 Email