The truth about dementia

‘My soul is me and will always be me, even through the ravages of dementia. I am who I am; a child of God.’

This is Christine Brydon, who was diagnosed with early-onset Alzheimer’s in 1995. News of her dementia diagnosis hit right when she was at the height of a successful career in science and technology.

She is not alone. Currently there are 800,000 people with dementia in the UK, with the number set to reach a million by 2021. And although it is predominantly a disease linked to old age, there are 17,000 younger people with dementia in Britain.

Of course people’s experiences vary, but for many the gradual erosion of the mind is a harrowing and exceptionally difficult thing to deal with, both for the sufferer and for the friends and family. How do you cope with a loved one who is ‘there’ physically but slipping away mentally? And does the Christian Church have anything, practically or theologically, unique to offer?

What is dementia?

Dementia is an umbrella term that describes a set of symptoms that occur when the brain is damaged by disease or strokes. There are several forms (the most common being Alzheimer’s) and symptoms include memory loss, speech impairment, mood changes, confusion and hallucinations. While there is no cure, medication is available and can help slow progression in the early stages of some dementia. As author Terry Pratchett, who was diagnosed with early-onset Alzheimer’s, says in an Alzheimer’s Society video: ‘Aricept [a dementia medicine]... is not a cure, but acts as a line of sandbags against the rising tide of unknowing.’

Historically, there has been a lack of understanding about what dementia is, and consequently what constitutes good dementia care. It has also often been thought of as a mental illness, which faces stigma of its own, rather being recognised as a physical condition. ‘Dementia is surrounded by negative stereotypes,’ says John Swinton, professor in practical theology and pastoral care at the University of Aberdeen. ‘“The person has gone”; “they are not who they were”; “they have lost themselves” etc. These stereotypes push people into isolation; people with dementia are easily forgotten by the community. We need to learn how to remember one another well when we have forgotten who, and more poignantly whose, we are.’

Thankfully, the tide is turning for dementia. It is currently the subject of a government initiative, the Dementia Challenge, which is seeking to improve community awareness, the standard of care and research into dementia. Bringing together the government,NHS, charities and health and social care sectors, this commitment will bring much welcome change. One of its aims is to address the incredibly low diagnosis rates. The latest statistics reveal that in 2010-11 the average diagnosis rate across England was 42%, leaving more than half undiagnosed. The aim is to push this up so that by 2015 two-thirds of all people with dementia will be diagnosed.

Dementia care has also been subject to a shift in focus. Where previously those diagnosed had been brushed aside, ignored and virtually presumed to be already dead, now the focus is very much moving towards a ‘person-centred’ approach, something championed by facilities such as MHA Stanton Lodge in Swindon. Rather than being a care home in the traditional sense, it is a block of individual apartments for people with dementia to live in, with their carer, with access to any support they mightneed. There is no funny smell or sterile environment, instead Stanton is homely and welcoming.

The manager, Jan Harper, is hugely committed to the home and its residents, with her faith forming a central part of her role. She is funny, gentle and seems to have an intuitive understanding of the residents’ needs. Instead of getting frustrated when one woman was refusing to eat, the carer instead offered her the more tempting chocolate pudding. The resident wasn’t being stubborn, Harper explains; she probably didn’t like the main course. It’s a simple exchange, but serves to illustrate how important it is to recognise a person’s individuality and preferences, even if they lose the ability to communicate them.

Who(se) am I?

 When a diagnosis of dementia is made, it can hit you like an emotional ton of bricks. For Brydon, the diagnosis of early-onset Alzheimer’s was terrifying. ‘At first I felt disbelief as I was only 46, and I became depressed,’ she says. ‘I felt shock, horror, and fear.’ Many fear hearing such a diagnosis. Swinton, who has also written Dementia: Living in the Memories of God (SCM Press) says that this can be attributed to negative connotations surrounding death. ‘As a culture we’ve forgotten what it means to tell good stories about what death is and what it means. Traditional religious narratives [encompassing stories of death] have been pushed away. We try to sustain ourselves in the present with health and virility, but all you’ve got is the moment. In wider society, death has a negative meaning and things affecting mind and mental health are deeply feared.’ But there is good newsin the light of the Christian faith, says Swinton: ‘The key to understanding dementia is recognising who we belong to; whose we are, rather than who we are. If we concentrate on who we are, then it can appear that neurological decline and deep forgetfulness equates to a loss of self. However, if we focus on whose we are, things look very different. We belong to God. It is God who holds us in our identity and it is God who will never forget us.’

Losing the person

For carers, friends and family of those diagnosed with dementia the fears often surround the loss of the person; their personality and quirks. It is so painful to watch as someone struggles to remember names, places and events in their lives; harder still when the person loses all ability to speak or has a sudden flash of realising they have dementia. ‘There is still the belief thatthe person is dying in bits, but scripture makes it clear that it is “given unto man once to die”,’ says Louise Morse, media and communications manager at Pilgrims’ Friend Society. ‘And scripture also makes it clear that when you ask Christ into your life, he comes in the form of the Holy Spirit. He is there with you, even in dementia.’

We place such an emphasis on cognitive function that then causes challenges when dementia is diagnosed: ‘It is our tendency to see ourselves in an individualised hyper-cognitive context, which makes someone with advanced dementia appear to be avanishing person,’ says Swinton. ‘Actually, the experience of forgetting and not being able to do things for ourselves that we see in people with dementia is but a reminder of the state of all human beings. To be human is to be dependent and contingent.’

Questions of suffering

Seeing dementia take full effect will bring with it a painful season of suffering for all those involved. In these moments, the insurmountable nature of dementia and the frustrations can often feel too much to cope with. This inevitably leads both the person with it and their friends and family to ask questions such as ‘Why?’ and ‘Where is God in all of this?’ One carer I spoketo described how receiving confirmation of her husband’s Alzheimer’s diagnosis challenged her relationship with God: ‘At first I was very disturbed and scared. It made me ask God, “Why has this happened to me?” Anger rose up in me. It took time for me to work these through with God.’ It is a heartbreaking situation for anyone to be in, and there are no easy answers.

Suffering is a question all Christians have to work through at some point in their lives. ‘Nobody understands the full mystery of God,’ says Morse, who has also written Could it be Dementia? and Worshipping with Dementia (Monarch). ‘But we know that the whole of humanity has fallen. So if you’re walking through a muddy field, you’re going to get muddy. You can’t protect yourself from the results of a fallen world. There is no promise that once you become a Christian you won’t become ill.’ But this doesn’t mean you’re alone in dementia. Mike Dilly, chaplain at MHA Stanton Lodge, says: ‘Where is God in all of this? God is there with the person and is one with their soul; the real person is still there. God is there with the person who is brokenhearted because it is their husband [or wife or parent] who has dementia. God is also in the people doing the caring and in the research scientists…finding out more. God is there in all those things.’ For the carer I spoke to, clinging onto God during the tough times is her lifeline: ‘You just have to cope and keep going. The worst thing is, you know that he is not going to get better. You have lost a husband and gained a child. Without my Lord I don’t think I could have borne the pain and the feeling of utter desolation. But in the end, God is good whatever.’

Held by community

The Christian community has a profound role to play in dementia care. Not least in ensuring someone’s identity remains intact. ‘It is as we are remembered properly within the Body of Christ that our identity is assured, experienced and held in place even inthe midst of severe cognitive decline,’ says Swinton. ‘Our identities are deeply tied in with our relationships with others. And so even if a person forgets themselves, the community around them don’t have to forget. Memory and identity are in part constructed and held by the community.’

For Brydon, this is essential: ‘My soul is given life and meaning in my Christian community. We need to be included, with your support, in all acts of worship and remembrance. Reassure me of your presence, and through you, of Christ’s presence. We need you to be the Christ-light for us, to affirm our identity and walk alongside us. Never let me say, “My God, my God, whyhave you forsaken me?” You are Christ’s ambassadors who can walk alongside us as we approach the valley of the shadow of death. We can connect powerfully spirit to spirit at a deep level. You can see in us the way to live beyond cognition and emotion, and at the level of the inner spirit.’

Worshipping and praying with people who have dementia can be incredibly meaningful and powerful. Communion services can offer a chance for a deeper level of connection. ‘[During Communion] you have to say, “This is the table of the Lord, not mine”,’ says Dilly. ‘I’m not worrying about those who eat or drink without discerning; I see it as a sacrament which in itself gives blessing. It often ? particularly for people who’ve had a church background ? will strike chords at a deep level, [in] the soul that is not touched by dementia, and it will resonate there. I’ve had people who’ve not been able to say [anything] and suddenly with the right hymn they’ve sung every word. It’s reached in and touched that part that other words do not reach.’

Space for sadness

Along with worship and prayer, pastoral care should also allow space for grief, both for the person with dementia and those that care for them. ‘When the person before you doesn’t seem to be who they were, it leaves friends and family deeply bereft,’ saysSwinton. ‘It is fundamentally important that we take seriously the issue of lament. It’s ok to be sad and broken. But it’s important to remember that lament in the Bible is a way of expressing sadness and brokenness in [the] context of prayer.’

For carers there is often much pain as they seek to do the best for the dementia sufferer. ‘It’s not the physical act of caring that’s detrimental, it’s the emotional impact of caring for a person with dementia,’ says Morse. ‘Negative emotions include coping with rejection, continuing grief, guilt, feeling protective of their recipient, anxiety and tension from trying to anticipate what may happen next.’ Churches are ideally placed to step in to help lift this caregiver burden, but sadly this doesn’t always happen, especially in cases of long term dementia.

Dementia in the body

Understanding dementia and its intricacies is also important for churches. ‘An understanding that says, “We’ve come to church to worship God” means that distractions are not appreciated,’ says Dilly. ‘Rather we should say, “We’ve come to church because we are part of the Body of Christ.” If he calls his body together and some of that body is in a wheelchair, we’ve got used to that; if some of that body has dementia, as a church we’ve still got to get used to that.’

There are so many wonderful resources available for churches that are already proving popular and useful. In the heart of the Surrey countryside, CWR, a Christian training centre, runs regular Insight into Dementia training days. Led by Rosemary Hurtley, the course has brought together a variety of people, attending for different reasons. I met some who were walking the journey as a carer for a loved one, some who were carers by profession and others who were members of churches simply wanting to know more so they could develop the care ministry in their church. This willingness to talk about dementia ? what it is, and how to help and support those who are affected by it ? was so encouraging. It left me feeling hopeful and stirred toinvestigate the things my own church could be doing. As simple as it is to begin visiting care homes or offering support to isolated carers (who probably feel guilty for even asking for help), the challenge comes with long term dementia. It is likely that the visits begin to become less regular, or completely stop ? leaving the person with dementia, and their carer, back at square one.

Souls live on

Dementia is a journey and one that the Church is uniquely placed to speak into. As we see the person with dementia as a valued life, loved by God, with a soul that lives on beyond death, we can help those affected to feel hope and well-being. ‘My journey [documented in Dancing with Dementia: My Story of Living Positively with Dementia] along the path of dementia has become one of survival with hope,’ says Brydon. ‘I believe my soul will always remain as I travel this path of making meaning in life and of discovering the glory of God within me and within others. By focusing on my soul rather than my mind I can be free of my fears of loss of self, and in so doing, can help liberate you from your own fears that you are losing me.’

PRACTICAL PASTORAL CARE

If you are keen to do more for people with dementia, perhaps try one of these:

Go and visit

Ask beforehand, but a visit to someone in a care home or in their own home is often so welcome. Pets and children are usuallypopular.

Care for the Carer

Many people with dementia do end up in care homes, and this is can be incredibly painful for their family. Offering to be a listening ear or to accompany them on a visit to the home is a good way to offer support and care.

Cook a meal

Often carers are so busy supporting their family member that they neglect their own needs.

Take a trip

Isolation is a huge issue for people with dementia, so offer to take them out to the shops or the pub. Also, the carer can feel immensely isolated. If the person with dementia cannot be left home alone, arrange for someone to sit with them to give the carer some time out.

Sit and pray

Sit and read the Bible and pray with the person with dementia. Also, spend time listening to the carer. Sometimes they need to offload to somebody.

Signpost

If further help or support is needed, find out who the relevant agencies are and pass the information on to the carer, or offer to make the call if they’d prefer.