Nearly everyone knows someone affected by dementia. A new venture has been exploring how faith communities can give practical support to people affected. The work actually started a year ago, in discussion with people from faith-based organisations from Ireland, north and south of the border, as part of the Dementia Festival of Ideas, about how people of faith can work to support people with dementia and their families, carers and care workers.
The scene was set by a discussion on the complexities of faith in relation to dementia. There are elements of spiritual belief and religious practices that people with dementia may not be supported to maintain for practical reasons. Faith that explains the meaning of life and hope of life after death may also reflect on the meaning of illness, particularly mental illness or conditions that affect behaviour.
‘Some faith groups seem to step back. This could be because of their theological position or more often because they just don’t know how to be useful’.
People focusing on the practical also face ethical issues, like what to do if there is a conflict between the roles and beliefs of a patient and their nurse or family. What can a professional do? Should you pray with a person affected by dementia, whether or not you share their faith? And what happens if the person with dementia appears to be turning away from or even towards a new religious position? Do we allow them this freedom or keep nudging them back? Is it our place to interfere?
Spirituality does not seem to be a great part of health or social care, scarcely being asked about or referred to in assessments and delivery of care. This discussion about the role of faith was not just about dementia-friendly environments; about places of worship and their physical design, though that is very important. It was about faith itself. One of the women at the meetings said,
‘I might cry all day but God knows what I am going through so I am not totally alone’.
‘Loss of understanding does not mean loss of eternal life’.
The idea that suffering can be offered up and can remit the just punishment for sins was criticised by those working on the project. Their view was that God made our good days and our bad days, and we should learn from that. There is a question of whether the practical support that faith groups could provide is the expression of a theology or merely a social response.
‘Is dementia a test of faith? If I am struggling is it because my faith is not strong enough? I know that God knows what I am going through.’
‘To be honest, I don’t hold with this theological discussion. Let’s just do what we can to help, and be kinder to each other.’
Research indicates that a strong religious faith is good for your health and your resilience. The idea of the Holy Spirit as a comfort and that sickness and death are not the end was important to those present. People expect more from a faith group, than from a social group. People might feel left out and let down after a diagnosis, but is that worse if it was your church friends, than those at the bowling club?
A voice in the debate about dementia
Faith groups have particular knowledge and interest in vulnerable people and can raise up their voice in the debate about services. Dementia should be on the agenda of any church. With education and support, political action - taking part in the public debate - could be an important element of that. That voice, however, must be well informed. And there is the question of whether faith groups reach out to each other, both within and across traditions. The personal stories of those affected should influence thinking. Churches have a potential social and political role in the dementia debate because they know the people affected intimately. They are aware of the differences in need in rural and urban areas.
Prayer, religious observance and spiritual needs
Faith leaders must have the information they need to support people as the condition advances. Congregations are ageing. Adaptations such as “Messy Church” for children are commonplace, but where are the adaptations for cognitively impaired older adults?
Blessings and prayer support from others really makes a difference to many people. The idea of a blessings box where you could request the blessing you really need…like time to go and get your haircut, appealed. It really is the blessing of knowing that you are not alone, and can ask for help. It is an acknowledgement that you do have difficulties.
A lot of professionals with no faith care for people with dementia. They need to be able to respond for example helping someone to say their prayers, or recite their rosary. Religious observance is part of someone’s identity and part of care. There is a difference between faith, organised religion and spirituality and all are importantly related but not interchangeable. We need to ask whether we really know how to “bring back faith” particularly if faith is part of what keeps carers going.
Safeguarding of adults at risk and local practical support
Much was made in the discussion of the requirement on people to do practical things like making food, or offering respite. Community contact is hard to maintain. Befriending and practical activities may give hope to people at the end of their tether.
'Churches need education in how to accept people with dementia’
Being involved in the formal safeguarding of adults at risk is increasingly important. If you are going to visit a care home, you need to recognise anything wrong and what to do about it. This not easy.
Could there be an equivalent to the Dementia Navigator in the form of a “Faith Navigator in Dementia”? Bearing in mind the complexity of both faith and dementia, this would be an important role. A single preacher may find this hard to manage and so a pastoral team model may be the only workable one.
The practical benefit of familiar hymns and routines is widely accepted, along with a sense that faith seems to be more important in later life, or even when a dread diagnosis has been given. The interaction between faith practices and early memories is a comfortable one, sometimes, though this cannot be taken for granted.
‘It was hard for him going to church with her because she started on that she would not wear a hat and a hat was required. How can we break down the barrier raised by worrying “What will people think?”’
‘Technology has a role, such as web streaming of services’
Next steps – what people said
People who took part said they wanted to know more and carers in particular wanted to know more about how organised religion would help them. They wanted further networking, to learn from others. Complex issues such as living wills, end of life care and how safeguarding champions will work were raised. People felt that they learned about other organisations, and though everyone is constrained for time and other resources, much can be achieved. People talked about personal resilience and inner peace that come from a faith, but recognised that there are gaps in what we can do for others, which will only be filled with more education.
'I think we should go on with this discussion. Send me the questions because I want to talk about them at our meetings.’
The resource for churches is a way forward from this work. The discussion must continue.