It is estimated that nearly 1 million people in the United Kingdom, mostly elderly, are living with dementia. The majority are being cared for at home by their marriage partner and other family members. Many of the people in our congregations are elderly and some of them will develop dementia symptoms. They are likely to be cared for by their families, some of whom will also be elderly.
It is important that Christians and churches know how to respond to those in their fellowships who are suffering from dementia and are able to come alongside those who are caring for them. Although this article is written about those with dementia, much of what is said also applies to other care situations.
What is dementia?
There are different kinds of dementia. Alzheimer’s disease is the most common disease that causes dementia, accounting for 60-70% of all dementia cases. Vascular dementia is caused by reduced blood supply to the brain, often as a result of a stroke and may begin suddenly. For some people, dementia can occur when they are younger, maybe in their 50’s. The progress of the condition varies, but usually, the short-term memory begins to fail first and later the long-term memory. A person with vascular dementia may be expected to live about 5 years after the onset of the disease.
In the early stages, dementia’s influence on our life may be small and might seem to be the kind of memory problems most elderly people experience. At first, the person may be able to cope quite well with normal life, but as the symptoms of the disease increase, so will the need for care increase.
Created by God
We must always remember that a person with dementia was created by God and bears his image. They may be a mature Christian who has faithfully served the Lord over many years. They may have been a pastor or pastor’s wife, a missionary, an elder or deacon, a children’s or youth leader. They may have been a loving father or mother and have pursued a successful career in a profession or had a manual skill. They may have had great sporting prowess.
It is important to spend time with them and to relate warmly to them even when their behaviour may be strange, or their speech doesn’t make sense, or when they often repeat themselves. Even when a person cannot express themselves, they may understand much of what they hear. They will also be very aware of our love for them. Loving them affirms that they are precious to us and to the Lord.
In the kind providence of God, a Christian with dementia can often still remember the words of hymns and Bible verses they have learned by heart. They will enjoy attending Sunday services, Bible studies and prayer meetings. Fellowship, and especially singing, will be very meaningful for them. Playing familiar hymns every day at home can greatly encourage the person with dementia and their carer.
Caring for the carer
Those with dementia need to be loved and to enjoy their lives as much as possible without being afraid. Their carers may take total responsibility for the daily domestic routine and be ‘on duty’ day and night. They, too, need to be cared for. They need support, company and fellowship.
Caring for the carer is very important because 24 hour care, 7 days a week is very demanding. It is exhausting and can be lonely. A person with dementia may experience disturbed sleep and personality changes. They may not recognise their loved ones and put themselves at risk by wandering away from the home. Those looking after them may not be able to get any break, whilst still trying to manage the household tasks, some of which they may not be familiar with.
Christians may be able to look after the person with dementia to provide a few hours break for the carer. Regular pastoral visits and visits by Christian friends is a great encouragement. Spending time with the family is good, particularly times when the Bible can be read together, and people can pray and sing together. Churches could organise informal fellowship meetings for dementia sufferers and their carers. Such meetings could be made known to others through doctors and social workers and could become a new ministry opportunity.
A friend of ours who has retired from cross-cultural missionary service is now a full-time live-in carer for a lady with dementia. Her caring provides much needed relief for the family and enables the lady to stay in her own home.
Needing more support
In the later stages of dementia, or if the family aren’t able to do all the care themselves, outside carers will be needed. This involves significant cost and it can be difficult to find suitable carers. It is important for Christians to realise that daily help from carers, though greatly appreciated, inevitably disturbs the normal routine and the family will still need much support.
Being in our own home in the company of those we know and love is very significant. Being in a familiar place with our loved ones around us makes us feel secure. Other carers in a hospital or care home may provide excellent care but the context is unfamiliar and lacks the reassurance of being at home.
However, for some, residential care will become necessary and finding a suitable care home can be difficult. It is good for churches to support those in this situation by enabling visits, and spending time with both the dementia sufferer and their family members. A dementia sufferer may not understand what they are experiencing and be disorientated and afraid. The presence of a loved one is very comforting and reassuring. A marriage partner or child may be upset and lonely. They may also struggle with guilt and need much love and support from the church.
God’s eternal love
A very helpful book is Second Forgetting – remembering the power of the gospel during Alzheimer’s Disease by Benjamin T. Mast and Scotty Smith. It encourages us not to forget the grace of God in the gospel even when our memory of other things is failing. It also provides helpful information about dementia and has many suggestions about how churches can care for and lovingly support people with dementia and their carers.
In the midst of the sadness of seeing someone we love suffering from dementia and of the demands of caring for them we can know the comfort of God’s eternal love for them and for us and rejoice in our future hope.
In a communion hymn, James Montgomery says:
And when these failing lips grow dumb
And mind and memory flee,
When Thou shalt in Thy kingdom come,
Jesus, remember me.
In Romans chapter 8, Paul gloriously affirms:
Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? No, in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.