Can churches be dementia-friendly?

At present, there are about 850,000 people in the United Kingdom with dementia. This number is expected to rise to one million people by the year 2025. Two-thirds of people with dementia live in the community and are supported by 670,000 family carers. One in 14 people over 65 years of age has dementia, while the figure for people aged over 80 is one in six. Over 40,000 people are under the age of 65 with dementia. Concern exists about whether society will be able to address the future health and social needs of people with dementia. Within social policy, this has led to an increased reliance upon indigenous family and community resources.

Many people with dementia find that their local community is unfriendly towards them. They find many people do not make the effort to listen to them and make it difficult for them to have an active role in the community. Conversely, a dementia-friendly community is a ‘city, town or village where people with dementia are understood, respected and supported, and con dent they can contribute to community life. In a dementia-friendly community people will be aware of and understand dementia, and people with dementia will feel included and involved, and have choice and control over their day-to-day lives.’ The aim is to improve the quality of life for people with dementia wherever they live in the community.

Thus the latest Grove Pastoral booklet sets the scene for the challenge and opportunities of ministry with people who have dementia. In Developing Dementia-Friendly Churches, Trevor Adams explores the whole range of issues involved, engaging with a theology of mission, looking at assumptions in government policy and the philosophies that underpin them, and including many practical examples of churches engaging in this ministry. He begins by exploring possible understandings of mission that will lead us to engage with people who have dementia and their carers.

The first approach challenges the view that local communities can be changed without knowing much about their culture, needs and experience. It highlights indigenous resources that are available in the local community that can support people with dementia and their family carers, and reframes Christian mission as a ‘two-way exchange of gifts and includes listening and sharing with others.’ This approach sees Christian mission as a reciprocal dialogue between churches and the local community through the creation of relationships and alliances that respect and value people of difference. Moreover, it positions churches as vulnerable and dependent on the hospitality of others in the local community. The approach highlights churches and local communities displaying justice and righteousness, and facilitating ‘the recovery or development of places which are humanizing, through the fostering of independent community relationships within an identifiable geographical location whose scale is defined in terms of walkable distances.’

The second approach towards Christian mission draws on the work of Tom Wright. This approach states that Christian mission is concerned with building for the kingdom of God that occurs on earth now, as the church looks forward to God’s future restoration of creation. Churches are seen as bringing hope and healing to the world and responding to the love poured out in Jesus’ death that is not only directed towards Jesus but also to others, especially those in particular need. Wright calls upon the church to take places seriously as ‘sacred space’, not as a retreat from the world but rather as a bridgehead into it. In this way, Wright argues that the church must not rest as long as the world remains spoilt and defaced. This defacement is seen throughout creation and includes social and political structures, such as those that disadvantage and marginalize people with dementia.

This is followed with some practical examples of churches taking seriously this missional challenge. Adams then explores the ‘person-centred care’ narrative which shapes current government policy, and both the positive and negative impact of this approach.

The person-centred account of dementia firmly established the pre-eminence of secular humanism in dementia-care policy, practice and research. But, as Jenkins notes, this is a double-edged sword and, while recognizing that people with dementia are sentient beings with inalienable human rights, humanism also relies upon normative understandings of what it means to be human, which serve to position people with dementia as deficient. This secular approach extends to recent empirical studies that make little account of the presence and potential of churches as social capital, and their potential to contribute towards the creation of dementia-friendly communities.

The big question for Christians and churches is: does Scripture and theology offer an alternative narrative that might shape our thinking? Adams believes so, and sees it as including issues of spirituality, justice, the relationality of God, victory over evil in Jesus’ death, hospitality, and the church as eschatological community.

The narrative begins by affirming that God is just and that God’s expectation is that people should display justice. The Old Testament calls on people to ‘Do justly and to love mercy.’ Keller notes in Mic 6.8 that the difference between love [Hebrew: chesedh] and justice [Hebrew: mishpat] is that while chesedh focuses on the attitude (or motivation) behind the action, mishpat puts the emphasis on the action itself. He argues that the meaning of mishpat is wider than simply punishment for wrongdoing and includes ensuring that people have their rights. The Bible identifies four groups of people who should receive justice: widows, orphans, immigrants and the poor. Keller comments that today this group would include older people, and I personally would also include people with dementia, as they also need justice.

The narrative continues by drawing on Wright’s idea of the ‘covenant of vocation.’ As already noted, Wright argues that God’s calling on humans is to reflect the praises of creation back to the creator and to reflect the creator’s wise and loving stewardship into the world and that this is what it means to be and live as a genuine human being. According to Wright, this calling extends to all people and is not dependent on their cognitive ability. Moreover, the calling not only includes people with dementia but also affirms their identity and role as humans within creation. People with dementia are therefore just as much part of the church as any other person and have a shared calling to fulfil. Together with people of full cognitive ability, people with dementia are a ‘royal priesthood’ that stands between God and the rest of creation and reflects ‘the creator’s wise and loving stewardship into the world.’ Their calling is to be redeemed human beings and justified justice-bringers who are thus called to act as stewards of God’s redeeming love and justice, to help restore creation now in the expectation of its full restoration when Jesus returns, at which time ‘There will be no more death or mourning or crying or pain, for the old order of things has passed away’ and that in everything God will have the supremacy (Rev 21.4).

Adams then explores how to engage with the needs of the local community and from that develop and strategy of engagement and ministry, which will include training those who will be involved. The final chapter of the booklet includes a wide range of practical advice, addressing general communication, the impact of church buildings, how to make our worship and prayer dementia-friendly, putting on ‘memory cafés’, and engaging with carers of those with dementia. The comments on prayer are typical of the practical orientation here.

Prayer is an important part of the life of a church and so it is with dementia-friendly churches. Churches should seek to help people with dementia to engage with God through prayer and enable others to pray for them in church services or at home.

When praying with someone who has dementia, take them to a quiet and safe place where there are few distractions. Remember to turn o your mobile phone. Be aware of the church’s safeguarding policy so that the person with dementia is always safe, treated with respect, and not put at risk. Introduce yourself and ask them what they would like to pray about. Keep prayers short and simple. Always use short sentences and easy-to-understand language that will help people with dementia follow the prayers. Use familiar prayers like the Lord’s Prayer, which people with dementia are more likely to remember from their past. Try writing prayers with people who have dementia, as they may find this helpful. It will increase the relevance of the prayers to them and help them express their thoughts and feelings. When I take services in day centres for older people, I pray for people who attend that are presently in hospital. When you are praying with people who have dementia, tell them that you are starting to pray. Let the person with dementia know when you start and finish praying with them. Think about asking someone with dementia, or a carer, to pray during a time of church prayer or at a prayer meeting.

The booklet thus offers a comprehensive introduction to what will be an area of ministry of growing importance in the years to come.

You can copies of Developing Dementia-Friendly Churches for £3.95 post-free in the UK from the Grove website. You can also order an electronic PDF delivered by email.

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15 thoughts on “Can churches be dementia-friendly?”

  1. The suggestions at the end are very practical and could actually enrich the life of the church community as a whole. Avoid saying things like ‘this is so easy you don’t need the words – even a child can learn it.’ Not only do such sentiments hurt the individual, they also hurt the carer or family as they feel the pain of that person too.

    • Every person with dementia is an adult, like you and me. Infantalising people with dementia makes them feel as if they are a child and allows others to think it is OK to talk about them and treat them as if they are children. There is a power issue here too.

      Trevor Adams

      • Indeed Trevor. I don’t think that people generally set out to exclude people coping with mental processing issues such as dementia, brain injury, motor neuron diseases and more. Until you experience it, we cannot imagine what it is like – we can think that we are adapting to include them but it is really just the tip of the iceberg. For example you cannot imagine how many times you need to repeat and reinforce something if you have no direct experience of living with or living with someone going through it. My natural inclination is to guide people through worship – not intrusively – but giving just enough information and time to allow people to find where they are. Yes, it might be written in the order of service but that doesn’t mean that everyone is actually on the same page!

  2. This “over 80 is one in six” is an horrendous reminder of the way things really are. My uncle has just gone into a flat with a higher degree of care available. He has difficulty in even remembering his wife’s name…she died having suffered with serious dementia several years ago.

    In church I’ve come across those with dementia who have an almost total disconnect with what’s going on…. though one of them dances in the aisles occasionally. For me that’s totally brilliant!

    A question is, indeed, how to accommodate them in services? I thinks there’s a continuum in music required there where old and new songs/hymns are called for as well as some clear and familiar liturgical markers. This isn’t an orienting to ‘that group’ entirely but remembering ‘they’ are there. It’s also remembering that this isn’t a set measurable state that all have. There are degrees of dementia immersion and a lot of people (thinking about “over 80 is one in six. “) on the road to a much more serious state of the disease.

    I wonder if ‘we’ like having ‘them’ in church but don’t really positively accommodate them?

    • Dear Ian

      I think what you suggest is a good idea. The church I attend can be very noisy and catering to millennials, though we do have quieter services earlier on Sundays. There are various other issues to address in services than the music such as sound reproduction, tolerating disruptive behaviour, and shouting out – I am not taking about the millennials here but people with dementia ! It may be a church decides to have a short alternative service for people with dementia and their family carers sometime in the week, though you could argue that this is not inclusive. This shorter special service may be followed by refreshments that would allow carers to talk to each other, find a sympathetic ear and get tips on how to address any issues. Yes the church might like to have people with dementia in church but the real issue for me is that I believe Christ died for all people, including people with dementia, and people with dementia are part of their mission, just as much as and millennial. I hope you find my book useful.

  3. Ian – thank you. The booklet seems to be a rich resource.
    We have had a Dementia Cafe in our church for over two years, which is led by a very resourceful staff member from the Alzheimer’s Society. She is assisted by two ‘Navigators’ and five volunteers, four of whom are members of our church. The Cafe is popular and well-attended, with a wide range of speakers and activities. Singing is always popular – our ‘musical memory’ seems to plumb great depths in us and along with the music, the memory of the words associated with the music. In another context I met a dementia sufferer who could sing from memory all six verses of a hymn, but who could not remember that her husband had died seven years previously – she still saved a seat for him at services.
    We pass on information about the Dementia Cafe as seems appropriate, and I was delighted when a local chemist put a notice about it in the pharmacy window, and when he and his staff all became Dementia Friends.
    I very much have my L-plates on with this volunteer work. There is so much to learn from dementia sufferers themselves and from those who have experience in being alongside them. I am becoming more aware of how challenging it is for carers whose loved ones no longer recognize them, and those whose loved ones are in denial about having dementia, and who think they can manage without the help their carers so much want to give them. I feel humbled when I listen to these people.

  4. We had a dance round a maypole and hung ribbons on a tree to celebrate new life in our last Forget me Not service! We don’t expect children to cope with same format as those with long history of discipleship- normally run separate sessions for different age groups to make it more fun. dementia friendly worship doesn’t have to be boring or devoid of the Holy Spirit but needs thinking about. By running a separate service we’ve seen new people come to faith and people on the margins welcomed back to preach and lead – God is bigger than the boxes we put people in!

  5. In her excellent play, Simeon’s Watch, Bridget Foreman explores the place of intergenerational relationships in caring for those who are experiencing dementia, either as a personal condition or because they are a family member or carer. The play was written after two years research and development by Riding Lights Theatre Company, working with health care practitioners, dementia sufferers, their carers and partners and children, and theatre practitioners. Launched in response to a request from Riding Lights supporters, the research explored what might be learned from various expressions of play, a normal part of theatre practice, as a means of engagement with people with dementia. Very briefly, through extensive workshops, we found that it was possible to open up areas of memory and conversation that surprised families and carers and that seemed to bring great pleasure and relative calm to the person with dementia.
    In our own family experience, over a period of some 16 years, it became clear to us that the younger members of the family, teenagers, early 20’s and 30’s, were much better at relating to and accepting dementia. They focussed less on what appeared to be lost and seemed better able to accept the developing relationship for what is was becoming. They were less stuck in patterns of relating and despite the often distressing circumstances, their willingness to accept change allowed their relationships to continue to develop and deepen. In some cases, their own experience of play through youth theatre seemed to inform and facilitate their times with a much loved grandparent.
    Riding Lights Theatre Company has been invited to explore the work further and we hope to build on what has been learned. From the work so far, our recommendation is to engage all the generations where possible, to be willing to travel in the imagination to whichever time and place an individual may think they are in. That is something that many adults resist strongly, insisting on the need to be clear about this present reality and considering it a matter of respect for the individual to make sure that isunderstood. Perhaps we could ask whose reality is more important? Is it better to express respect by being willing to travel into those memories that bring peace and contentment or should we cling to our established notions of respectfulness and insist on the truth of present reality? It’s an interesting question and there is considerable disagreement and debate on this specific issue. There is no doubt that the church can bring great kindness and support from its well of love and wisdom. Our hope is that the church may prove to be a very natural place to nurture the role of all generations in responding to this growing challenge.

  6. Bernadette, There is lots of scope to use theatre to help people with dementia and their family carers. I have seen theatre used very effectively to give carers insights about how to address challenging behaviours. I am presently seeking to help develop this work. I believe Bridget Foreman Riding Lights Theatre Company has gained much by developing Simeon’s Watch, and I trust you will find effective ways of using the insights you have gained to support people with dementia, carers and also those within churches. When I approach churches about becoming dementia-friendly, they often say this would be helpful as they have a lot of older people in their church. But they miss the point that young people have a lot to offer older people with dementia and intergenerational approaches are very important. Perhaps there is a role for dementia-friendly schools?


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