by John McClean
My stepmother was articulate, assertive, creative and organised. Slowly, and painfully, she became confused.
We must think deeply about how to care for those with dementia, and for those who also care for them, writes John McClean. (File picture: Steven HWG on Unsplash)
She couldn’t recall things or organise her day. A talented textile-and-design teacher, she lost both interest in sewing and confidence in the kitchen. She seemed co-operative, but we realised that the right word was ‘compliant’. The range of her chat narrowed. For a while, her main contribution to discussion was to ask everyone to sing a song. It slowly became impossible to really know what she felt or feared. Dementia reduced her.
A retired geriatrician, Dad could see what was happening. He cared for her and supported her. He made big and small decisions that had been her domain. He supported her emotionally and tried to bring some pleasure to each day. The range of their life reduced — no travel, fewer friends, reduced outings. Someone needed to sit with her if he went to church or shopping. Progressively she needed more and more physical care, to a point which was beyond him. Two years ago, for her own safety, he arranged for her to enter full-time care. While he was well enough, he went to her every day to talk and hold her hand, even when she no longer recognised him. She is still physically healthy, and walks laps of the facility every day, but it is hard to find the real her. A version of this tale can be recounted in many families in Australia, and in just about every church.
As our population ages, the number of Australians living with dementia is increasing quickly. In 2010 there were about 300,000. In 2024 there are about 421,000. The projection for 2054 is over 800,000.
The growing figures demonstrate the demand for more services and facilities. They also mean there is a growing burden of grinding grief. We need to understand dementia and how we care not only for those living with it, but also for the people who love and care for them.
There are medical facts to consider, and well as social policy questions. But first we need to be clear: whether a person’s mind does not work as it used to, whether they have reduced capacity, whether they seem almost to be emptied of their personality, they are still a person made in God’s image. In the era of Physician Assisted Dying, more than ever, Christians need to be clear that the value of a person, and our responsibility to care and support them, does not depend on their cognitive ability, or their capacity to choose. They deserve respect and care. Families and churches, as well as medical staff, need to understand how best to give them that respect and care.
Luke’s Journal, published by the Christian Medical and Dental Fellowship of Australia (CMDFA) has a compassionate and wise article on Jesus and Dementia by Ben Boland. It is directed to health professionals, but all will find it worth the read, especially pastors and pastoral carers.
Boland sets out the importance of affirming the full humanity of people living with dementia. Capacity and ability are not what makes us in God’s image. Boland offers simple guidelines for communicating with people living with dementia:
- take time,
- use positive body language,
- be concrete,
- share stories,
- calm distressed emotions, and
- use touch where appropriate.
But how does someone living with dementia hear God’s word? Can they express faith or have faith? The great truth is that God holds his people even when they do not seem to hold on to him. Boland promises that the next article will deal with spiritual care through dementia. Keep an eye out for that. I expect it will be essential reading. In the meantime, he recommends Coming to Christ in Dementia by Mark Wormell (Mountain Street Media, 2016). For a bigger and more detailed theological discussion see John Swinton, Dementia: Living in the Memories of God (Eerdmans, 2012).
We need to think about how to care for families, over years of difficulty and ongoing grief. Churches need to be ready to offer long term support. A lot of that will be listening and praying. Someone caring for a person with dementia at home will probably appreciate some regular visits and a few hours of respite care if the church has appropriate carers. When someone has a family member in an institution, a church pastoral care visit to the institution with the carer can be a chance to share the burden. The key is to recognise that caring for someone with dementia is a major pastoral issue, and care should be thought through; not just care for the person, but care for the carers as well.
Boland’s article reminds me to be thankful for the dignity and respect shown to my stepmother by those who care for her each day. It also encourages me that visiting her, for a walk and a chat, is a simple affirmation that she is made in God’s image.
(The Gospel, Society and Culture committee produces discussion papers on a range of issues affecting the church and society. Click here to view a selection of our papers.)