Hope, loss and dementia

A chaplain on hope and dementia

Ben Boland writes about the everyday reality of being an aged care chaplain. Sometimes living with dementia is the time people come to Christ, he writes

Dementia is one of the scariest words in the English language, however, I want to encourage everyone, there is hope in the midst of dementia.

Dementia is an umbrella term for a range of diseases that impact the brain, the most common of which is Alzheimer’s. As the brain controls much more than memory, dementia impacts much more than memory. For example, our inhibition, sense of direction and ability to swallow all require brain function. Additionally, while the biggest risk factor for getting dementia is aging, dementia is not limited to older people.

While there is currently no cure for dementia we can reduce or increase our chances of getting dementia relatively easily by:

  • Healthy living- eating well, regular exercise and not being overweight all reduce the chances of dementia.
  • Learning new things, and being socially active also reduces the chances of dementia.
  • Avoiding brain damage – drugs, alcohol and knocks to the head all increase the chance of dementia.

So perhaps the first hope regarding dementia is that  ‘living well’ provides a level of protection from not just dementia but a range of health issues.

There is also hope in the midst of a dementia diagnosis along with sadness and the prospect of profound change and loss. Let me explain: my days of playing rugby are behind me and yes, I miss it but my life is not defined by my ability to play rugby. Despite great loss, there are positive times for someone with dementia. In my role in aged care, I see that particularly people with moderate to advanced dementia often “live in the moment” much better than they did previously. Life with dementia is not easy, but were we promised ease?

It is worthwhile to examine why dementia so terrifies us. The first reason Australians are scared of dementia is we tend to be hyper-cognitive. Can I suggest we disproportionately associate ‘our person’ and worth with our brain? Dementia will challenge our Christian belief that a person’s value is not linked to their intelligence (or their function).

Secondly, dementia is scary because as humans we are relational and, yes, dementia impacts people’s ability to relate. Personality changes, decreased attention span and forgetting people’s names can all be caused by dementia. For some of us as dementia progresses, we can feel like we are losing (or have lost) a loved one although they are still with us.

All relationships change over time and relationships are never one-way streets. We might well be living with dementia for some time. In marriage the relationship changes due to health/illness, children and different seasons of life. To expect either yourself or your partner to be eternally 21 is foolish. Illness and serious illness particularly always change a relationship. This change is hard, and can be desperately hard, yet none of us want to be only “fair-weather friends”. We can look for the richness in what remains, while we are blessed with it.

Part of being in a relationship is leaning on/holding each other. By which I mean there are times when the other person needs us and specifically needs our memory. As an aged care chaplain I have been blessed time and again seeing someone sitting with a friend or spouse whose memories are frail and them being reminded of a memory.

From a Christian perspective, the Bible clearly states God knew us before our conception. Conception reminds us that  as babies we were fully relational. Yet to hold/relate to an infant is a privilege. We need to remember both relating to and being related to in the midst of dementia is also a privilege.

The most significant hope Christians have in the midst of dementia is the certainty salvation is all about Jesus. This is particularly significant for evangelicals such as myself who value reason. Reason is a gift from God but our salvation is not based on our understanding of penal substitutionary atonement!

The implications of this are twofold; 1) even if a Christian forgets God, God does not forget them and 2) conversion is not limited to smart people. Indeed, I have seen a large number of people living with dementia come to faith. Which is part of the reason Dana and I wrote ‘Jesus Loves Me’ and ‘Joy to the World’ which share the Easter and Christmas accounts with people living with dementia. Indeed the ‘childlikeness’ of some people living with dementia reminds us of Jesus’ words – ‘Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven’. If you are still hesitant consider watching this myth-busting clip about dementia ministry – https://www.youtube.com/watch?v=CWHmkjRj_xU

The challenge for us is to share Jesus’ love not only with the little children but with people living with dementia.

Rev Ben Boland is an aged care advocate and chaplain.