Winter sun in Eastbourne barely raises a glint on grey waves, but Mike, a softly spoken man with an athletic build, is transported to brighter beaches. Mike has dementia. He’s articulate and enthusiastic on the subject of Australia where, as a younger man, he was an expert in water sports, but he’s daily more baffled by the here and now. Mike’s wife Jenny tries to be philosophical about her husband’s retreat to the happy past – a past that didn’t include her.
“He gets very animated when he talks about Australia – and he talks about it incessantly – because he had a good life there,” says Jenny. “I wasn’t part of it, but he had a good life. Luckily he doesn’t talk about his ex-wife either. I’m not in the memories, but neither is she.”
You look hard for your luck in a situation like this. Around 800,000 people in the UK are currently living with dementia, and it’s predicted that one in three will be affected in the future. Yet it’s the loneliest disease – not just for sufferers but for life partners “left behind” as dementia claims more of the person they love. This is the challenge at the heart of Marriage, one of three films in Channel 4’s Dementiaville series, which explores a progressive approach to caring for people with dementia.
This week’s episode features Poppy Lodge, a care home in the Midlands that pioneers a new approach to dementia – just like Ivy House, a day-care facility in Eastbourne that has supported Jenny and Mike. Ivy House’s Jane Lowe calls for a fresh perspective on the disease: “The trouble with dementia is that we put this barrier up. If someone tells you they’ve got dementia, you may start acting differently towards them. Why? I want people to see the person, not the illness.”
Central to Lowe’s approach is the principle of engaging with dementia sufferers not just as the people they are now, but as the individuals they were. If someone is happier in the past, it makes sense to join them there, to engage with those memories, and build on the security they bring.
“Dementia sufferers have gone into a different world,” she points out. “We can’t expect them to come into our world, we have to go into theirs. But that’s really hard for the people who love them. You’re waking up with your husband and the person he used to be is no longer there.”
In a seafront hotel, wives who met at Ivy House and are now close friends swap experiences. The support they find in each other’s company is clearly a lifeline; dementia is an isolating illness. But friendship, however practical, however sincere, cannot replace a marriage.
June and George
June and George on their wedding day
June’s husband George was diagnosed with Alzheimer’s disease three years ago. “I’m told it’s the earlier stages, but my husband is still very far from being the man he was, which is sad for him and sad for me,” says June. “He was always a very practical man, he would respond immediately to any problem and respond immediately to me and my emotional needs. That doesn’t happen now. So you feel loss, a form of grief, and then it’s like a ticking time bomb, just waiting for things to happen.”
Married for 43 years, June and George shared a passion for theatre; George was chairman of their local amateur dramatic company. Lately he has been more preoccupied with his early life in the Sunderland shipyards. What remains of their shared experience – they appeared in more than 50 musical productions together – is, says June, “that engrained sense that the show must go on: I look in the mirror some days and say, ‘Right, girl, get your lipstick on. You’re going out.’
You have to find the positive side. George talks as he’s going off to sleep. Last night he just laughed and said to himself: ‘You wouldn’t think it now, but I’m a Sunderland lad.’ And things like that please me, because even if he’s complained to me through the day, he’s having a conversation with someone who’s making him happy.”
The gallantry of the wives, their pride in the men they have loved so long, breaks your heart.