A few weeks ago I met Hugh, (name changed) who was one of the fellowship at a church where I spoke about dementia. His wife was now in a care home because of it and as he sat and listened I felt that I couldn’t remember ever seeing anyone so utterly consumed with grief. After the talk, which was about the key things to know when caring for someone with dementia, the church organiser took us to a private room. When dementia is involved, grief is not just about loss, as devastating as that is, but is complicated by other emotions. Hugh came straight to the point.

‘The doctor was useless,’ he told me, ‘I didn’t know what to do and he couldn’t tell me. Nobody could tell me what to do, or point me to someone who could help.’ Hugh felt so inadequate, not being able to help his wife as well as he thought he should have been. I told him that it was not unusual, because without training in dementia no-one knows what to do when dementia comes into their lives. I write about this in Dementia: Pathways to Hope: I wish I’d met Hugh earlier. (Read more )

I’m grateful to the experts who’ve shared their knowledge and experience with me over the past 20-odd years. Each case of dementia is unique – a mixture of the individual’s personality and the brain damage. Even so, there are key factors that contribute to good care for everyone.

• The first is knowing that the person remains. Despite the changed behaviours, the spirit of the person does not change. The person remains. This can often be seen in their behaviour. My friend Paul has always been a quiet man, and still is now. Evidence of this is when someone with dementia reappears through the fog temporarily, with capabilities that were thought to be lost. The pastor who was silent for months, who spoke again one day and told his daughter that God had given him the Scripture: ‘Though he fall, he shall not be utterly cast down: for the LORD upholdeth him with his hand, Psalm 37:24’. She said it helped reconcile him to his losses, and comforted him

• There is always a reason why the person is behaving the way they are. Even when it is out of character, he/she is behaving as they would have done normally in the circumstances they feel they are in at the time. There are examples in Professor Graham Stokes’ book, ‘And Still the Music Plays,’ and in my books. He tells of a woman in one of the BUPA homes (he was clinical psychologist and medical director) who was quiet and genteel but who would become violent with caregivers who came into her room to change her leg dressings. Dr Stokes discovered that as a child she had been abused for years by her stepfather in her bedroom. A room in the home was converted into a pseudo-medical centre with Mahler-Hayley panels and clinical looking tables and chairs and her dressings were changed there with no trouble at all.

• Repetition can be an unaware, almost mechanical event, or it can mean that the person’s underlying question – the heart issue, hasn’t been answered. ‘Is there a meeting tonight?’ really means, ‘you won’t forget to take me to the meeting, will you?’ There was the husband who was answering his wife mechanically and she suddenly asked, ‘What did you say?’ Startled, he replied, ‘only that I love you,’ and she smiled and was quieted.

• Familiar Patterns of Behaviour Continue. A home manager had to speak with relatives about a resident who would slap the carers. They told her, ‘Oh, he’s always been handy with his hands.’ But sometimes familiar patterns are ‘comforting patterns,’ doing things in the way they’ve always been. A resident in one of our homes loved folding linen, so she was given a pile to fold each day. In another home, a resident who was very tidy, used to collect the toilet rolls from the lavatories and store them in a cupboard in her bedroom. The manager made it the official toilet roll store and once she got used to seeing the cupboard full of toilet rolls she stopped collecting them.

• When facts are forgotten, feelings remain and are heightened. People with dementia are sensitive to atmosphere and to body language: they may forget who you are but will remember how they feel about you. So be warmly expressive, smile and use ‘positive’ body language.

• The greatest ‘power’ in ministering to people with dementia is LOVE. Love is behaviour, not just feelings. Colossians 3: 13-17 says, ‘above all these things, PUT ON love.

• Aim to keep the person ‘contented’: anticipating and avoiding stress. A resident kept tipping her clothes out of the drawers each day. The manager knew that she had been a diplomat’s wife and had travelled a lot, so gave her a suitcase to put her clothes in. Peace reigned.

• Reinforcing the person’s sense of identity is paramount. Reminisce with the person with dementia (don’t ask do you remember?); go through photographs, mementoes… perhaps favourite old clothes: knowing the person gives you direction.

• Never correct the person. Reflect back something positive. For example, Paul said that tennis star Emma Raducana had visited him after her first big loss, and that he had encouraged her. Instead of saying she hadn’t come all the way from wherever she lived to Monmouth in Wales, which would have confused and upset Paul, Ruth told him how lovely it is that he is still the encourager that he has always been.

• When the person is ‘time-travelling’ don’t try to realign them with reality. Penny Garner (Contented Dementia) writes about her mother, a frequent traveller believing they were in an airport waiting for their flight to be called, when really, they were at the doctor’s surgery. She was relating her present situation, one she couldn’t understand, to one from the past, and she was content with that.

It’s so important to avoid mental conflict. Jane was saying goodbye to her mother in a care home, when her Mum said, ‘Oh, where is that Jane? When is she coming to see me?’ Jane replied, ‘But you know, Mum, how much Jane loves you! She’d be with you all the time if she could!’ Frank, the husband In Dementia: Frank and Linda’s story, always liked to help with the housework and Linda had to prevent him putting all the vases into the bin. She would take them from his hands just in time and say,’ how clever of you to know they need fresh water! Put them on the kitchen draining board and we’ll do it in a moment.’

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