Understanding dementia - from the inside

Jennifer Bute was a senior GP in the UK when she developed Young Onset Dementia. She became determined to use the unique opportunity of experiencing dementia from the inside to find ways of understanding and living with it in order to help others and those who care for them.

This is an extract – looking at understanding behaviour – from her book, Dementia from the Inside: a Doctor’s Personal Journey of Hope, written with Louise Morse.

Understanding behaviour – the importance of familiar things

A few years ago, I was in hospital in the acute medical ward. Two other patients had dementia. One had been admitted from a care home and had been sent in with nothing familiar of her own. She kept troubling the staff, claiming that someone had stolen her handbag. She was very agitated and would wander off looking for something familiar.

The staff were brilliant, and someone sat with her through the night. I suggested they call the care home to bring in her handbag or some photographs, something familiar to hold. Then at lunchtime her daughter appeared in a smart business suit, with some sandwiches. The mother was delighted as they chatted together. Afterwards the daughter told the staff she couldn’t see a problem, but as soon as she left the mother’s agitation returned. Even people without dementia can find hospitals disorientating, but for people with dementia it’s even more discomforting. The care home should have sent her in with some of her familiar items – and for a woman, few things are as familiar as a handbag.

The fundamental principles for understanding dementia

There are three basic principles of understanding people with dementia.

  1. There is always a reason why the person is behaving the way they are.
  2. When facts are forgotten, feelings remain.
  3. Familiar patterns of behaviour continue.

Understanding the triggers behind an emotional meltdown

It’s not uncommon for those with dementia to experience an emotional meltdown. I now realise that there are seven situations that could precipitate my meltdown and they will also apply to other people with dementia. I’ve identified them as:

  • trying to cope with a task that is too complicated
  • being in unfamiliar surroundings
  • travel
  • being unwell
  • being in a large gathering
  • being with unfamiliar people
  • having to cope with too much noise.

All these triggers are to do with sensory overload; pain and fear can also be contributory factors.

A recent personal meltdown

Although I didn’t see it at the time, all the triggers were present at a community barbecue – to mark the opening of a new section of the residents’ gardens. I’d been particularly looking forward to it and arrived early before some of the staff and helped by getting chairs and food and cutlery. It was held in a somewhat unfamiliar place with loud music and lots of people whom I did not recognise. In addition, I was tired because the day before had been particularly draining.

More and more people came, and I realised I was also seeing people who weren’t there: I was having hallucinations and I was heading for a meltdown. I stopped being involved, became increasingly withdrawn, eventually unresponsive, and soon had tears streaming down my face – which was my typical meltdown behaviour from when I was a little girl not coping with life, which included crying, running away and hiding.

It seemed to take ages before anyone noticed. They just carried on talking to me or expecting my help. Eventually a friend came over, linked her arm in mine and led me away saying, ‘I’m going home to get my sunglasses, and you’re coming with me.’ She was brilliant!

Helping someone in meltdown

Not all meltdown behaviour is like mine. The meltdown behaviour of other people with dementia reflects how they were when they were little. They will get cross or agitated, or yell or throw things – the sort of behaviours we talk about when describing what toddlers do.

What did Jesus do when the disciples had a meltdown after the resurrection when He appeared to them in the upper room? They were terrified. He reassured them by telling them to look, to touch, to find him food – familiar patterns that gave them something to do, (Luke 24: 36-49). When Peter was worrying how they would pay their temple tax, Jesus sent him to do something familiar – to catch a fish.

Understanding the impact of previous memories and experiences

At the time of writing, according to official figures there are 539,062 people who have been diagnosed with dementia in the UK. Each one is unique, and their symptoms are different, but the same principles apply to everyone, including those who have hallucinations. I believe all hallucinations come from previous memories and episodes stored in our brains, that reemerge at inappropriate times and in random order, mixed together in bizarre ways. Some of mine come from my medical experiences. One hallucination was the swarm of bees that swirled around my head, that I’d tried to get away from, batting them off as I ran. At times my olfactory (smell) hallucinations overwhelm me and I struggle. They tend to occur during meals which is tough.

I am sure many come from my experiences in the slums of Calcutta or from my time in Africa. When I hear the phone ringing or the sound of old-fashioned typewriters next door, or even babies crying upstairs, I know it can’t be so, but I still go and have a look. I tried to ‘overwrite’ these sounds by putting on some music, or by playing the keyboard or going to talk to one of the brilliant porters where I live – not that they realise why!

Listening for the meaning behind the words

Dementia brings changes in thought patterns; thoughts often come out as words and these can be significant, expressing needs or feelings, even if not easy to recognise. it’s important to listen to the meaning behind the words. For example, although someone could ask “what time is it?”, the question really could be, “What am I meant to be doing?” Each situation is different, of course but a helpful answer could be, ‘it’s 4 o’clock and we will be having tea very soon.’
All my experience and knowledge tell me that when someone has dementia, the real person is still there, even if trapped with a body and a condition that makes it hard for them to communicate. It gives me great joy to ‘find’ those who are further along the path than I am. Elsewhere in my book I look at ways of reaching the person, of affirming their worth, and enabling them.

Remember – Love never dies

No matter what stage the dementia, the ability to receive and to give love never goes. I was listening to the well-known passage about love in a new translation of the Bible and I thought how relevant it was to dementia. It’s 1 Corinthians 13: 8-11, in The Message Bible.

‘Love never dies. Inspired speech will be over some day… understanding will reach its limit. We don’t yet see things clearly. We’re squinting in a fog, peering through a mist. But it won’t be long before the weather clears and the sun shines bright! We’ll see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us!
But for right now, until that completeness, we have three things to do to lead us toward that consummation: Trust steadily in God, hope unswervingly, love extravagantly. And the best of the three is love.

This is an abridged version of Chapter 5 of Dementia From the Inside: A Doctor’s Personal Journey of Hope. by Dr Jennifer Bute with Louise Morse, published by SPCK.
Her insights on the disease and inspiring faith will be invaluable to anyone wanting to understand more about dementia. It is also available through the charity Pilgrims’ Friend Society

[thrive_link color=’orange’ link=’https://livability.org.uk/resources/dementia-inclusive-church/’ target=’_blank’ size=’medium’ align=’aligncenter’]Visit our Dementia Inclusive Church page for free resources[/thrive_link]

For more information about Jennifer and resources on dementia visit www.gloriousopportunity.org