The challenge of dementia

Over the years I have increasingly had to deal with people suffering from dementia. Hence this week’s blog. I want to address how we care for people with this dreadful disease.

Let’s begin by defining what we mean by the term ‘dementia’.  Dementia is the general term used to describe symptoms caused by damage to brain cells, including memory loss, confusion, language problems and changes in behaviour. Alzheimer’s disease is the most common type of dementia, which is the country’s biggest cause of death.

Dementia increases with age. For instance the percentage of people 65-74 is only 3%. However, the percentage is larger in later years. 17% of people aged 75-84, while for those aged 85 or older 32% will suffer from dementia.

So how do we help victims of dementia?  Much varies as to what stage people are on the dementia cycle.   For early sufferers the advice is that we need to follow the three ‘golden rules’ of dementia:

1. Don’t ask direct questions.
2. Listen to the expert – the person with dementia.
3. Learn from them. Don’t contradict them.

According to one website, the four best ways of supporting someone with dementia are as follows:

1. Remember they are still the person and friend you may have known for a long time.
2. Include them in group conversations.
3. Ask them their opinion, and do not assume that you know what they want.
4. Offer them your support.

My own recent experience of dementia concerns a very cultured widow in her nineties, who for many years was a close friend of my wife and myself.  When her husband, who was a distinguished paediatrician died, we often went away on holiday together – mostly in Europe but on one occasion we travelled together to India. Sadly she is in the last stages of dementia and is on a dementia ward in a care home. We visit her every week.  She knows that, in her words, she is ‘disintegrating’, and longs to die to be reunited with husband and with other friends who have ‘passed on’ into ‘glory’. She has no memory of the recent present at all and, for instance, cannot remember when her daughters have visited her. However, she can still recall some things from long ago. So I often speak to her about her childhood – as her former minister she used to tell me stories of what life was like in Wisbech, when she would jump into the river for a swim.  She was also a horsewoman, so I encourage her to talk to me about her pony called ‘Charlie’. Occasionally she might remember going on holiday with us, but not normally.  Normally we stay with her for 20 to 40 minutes, and then just before we go we each give her a big kiss, which she clearly enjoys!

Hitler believed that people suffering from dementia and indeed people with mental health problems should be done away with, and in 1939 began to kill them by sending them to be gassed in concentration camps. For him they were no longer ‘human’.  Listening to some right-wing extremists today, I think they too would think the best thing would be to do away with them. However, as a Christian I believe that even when dementia sufferers are talking gibberish and making all kinds of silly noises, they need to be loved and respected. For like us, they still are made ‘in the image of God’ (see Genesis 1.27).  Furthermore, dementia is not too dark for God is fully present with people suffering from dementia. In the words of the Psalmist “even the darkness is not too dark for you” (Psalm 139.14). Or in the words of the Apostle Paul, there is nothing which “will be able to separate us from the love of God in Christ Jesus our Lord!” (Romans 8.39).

A few years ago another close friend of mine died with dementia. He was one of the brightest men I have known. An Oxford man, he became head of the Manchester Business School. However, he too became a dementia victim, and it was my privilege to conduct his funeral.  As I said at that funeral, death for him was a ‘blessed release’. Death for him marked the moment when the restrictions of this life were over.  To paraphrase the words of Martin Luther King’s epitaph, he was “Free at last, free at last, Thank God Almighty he is free at last”. The fact is that our bodies do ultimately wear out – we are but mortal beings. But thank God there is more to life than this life. For those who have put their trust in Jesus, there is another world to enjoy. A world free of physical restriction, a world lived in the very presence of God.  Death is but a setting sail for a new and better world – and loved ones and friends who have gone on ahead, are waiting to greet us.