There are seasons in life – each with their joys and pains. There are times of freedom and choice, and times when we are constrained by our responsibilities – whether that is work, children, church ministry or relationships. But a new season of testing has become a much bigger reality for people in their 50s and 60s: the season of caring for dementia sufferers. Why is this?
As we live longer – and the physical illnesses of congestive heart disease and cancer that limited our parents to the “threescore years and ten” have receded – there is an increased likelihood that we will find ourselves caring for parents, relatives and partners who are one of the growing numbers with some kind of dementia.
Academic studies suggest that there are currently almost a million people in the UK living with dementia of some kind. Alzheimer’s accounts for over 60 percent of these precious souls, with Vascular dementia the next most common type followed by dementia with Lewy Bodies and Frontotemporal dementia.
And the issue is not going away any time soon. There are estimates that this number will rise to 1.4 million by 2040, placing an enormous strain on health services. In later stages of these diseases, hospitalisation or admittance to specialist care homes is likely, but currently more than two thirds of dementia sufferers are cared for at home by relatives.
For many, the earlier stages can be borne easily – lost keys, misremembered names and faces and dates. There can be times of happiness, hilarity and joy. But the strain on primary carers can grow as sleep patterns are interrupted, personalities begin to change and previously kind and loving people become angry, aggressive or hurtful in other ways. Sometimes sufferers can be physically healthy and robust while their minds fail. They can be difficult to manage and may escape the house to go missing, or be prey to people who may abuse them or rob them of money or possessions.
Everybody’s experience is different, though there are common themes. It’s fundamental to remember that people living with dementia are still persons, with abilities, feelings and emotional capacities that persist beyond the limitations in their cognitive or physical ability. A diagnosis of dementia is not the end. There is still much to live for and experience.
And many who live with dementia want to fiercely defend their independence, and are resistant to carers pushing necessary change upon them; whether that is moving to live with someone, having regular carers come in to help with feeding and bathing, for example, or moving into a care home.
My mother cared for her husband with Alzheimer’s who went through many of the stages outlined above – and cared for him at home to the end, with help from local family and state support. It was exhausting and distressing – particularly in the later stages. And soon after he died, she received the same diagnosis. She lived independently for two years, but then we had to close up the old house, and move her down to London to live with my sister, who put her life on hold for five years to look after her.
As things progressed, my mother was moved into a care home. My life changed again. On the way home from work each day, I would call into the home and sit with her for a time. But as the months went by, I lost my mum one memory at a time. (See my personal reflection written at that time.)
Caring for the caregivers
Carers of dementia sufferers carry a constant burden and pain. It can be isolating, exhausting, relentless, and involve complex calls upon them physically, emotionally and spiritually.
As Christian believers we need to be more aware of the increasing numbers of us who will be bearing this sorrow patiently, perhaps for years. The strains of a physical care routine – showering, changing, using the bathroom – can be minor compared with the emotional pain of losing a loved one, or having them turn on you with hurtful words and uncharacteristic rage. And the nagging doubts can rumble under the surface. Why is God allowing this to happen to them? Why me? And sometimes the strain of the promise “in sickness and in health … till death do us part” can feel too great to bear.
Unfailing Love: 30 Devotions to Encourage Dementia Caregivers by Robin Thomson. Published by The Good Book Company
A recently published book of 30 short devotions for those caring for loved ones with dementia puts it this way: “In the early days of my wife’s Alzheimer’s, there were times when her behaviour was very strange. She became paranoid about things being stolen and suspicious of people for no good reason. It led to huge tensions, arguments between us, and embarrassing and painful exchanges with others. At one point the police even became involved. I didn’t understand that this was part of the disease, and I became more and more frustrated, not knowing how to respond. I felt angry and helpless at the same time. I remember days when I literally didn’t want to get out of bed in the morning. I was so confused about what was happening, and so disturbed.”*
This book shares the varied experiences of others caring for dementia sufferers, but has a constant reminder that our God and the gospel has not changed. He still loves us; He still cares for us; the person you love who is slowly disappearing is still a precious soul, who is made in the image of God and is loved by Him.
Understanding these things will be the first steps towards being able to offer practical and personal support as a church and as Christian brothers and sisters to those walking this lonely and painful road.
*Unfailing Love: 30 Devotions to Encourage Dementia Caregivers by Robin Thomson is published by The Good Book Company, 2025.
