Real life: Adele Lootes on her partner’s rare form of dementia
When Adele Lootes’ partner Lance was diagnosed with a rare form of dementia, he regressed to the mental age of a toddler. She talks to Cher Heasmer about the progression of his disease and how their lives have changed
When Adele Lootes hears her partner Lance giggle, she feels the same familiar butterflies she’s always felt in his company. He still has the same laugh and mischievous sense of humour, and she cherishes these glimpses of the old him.
Adele, 43, misses the fun they used to have together and the laughs they shared. These days, their lives are completely different from when they first started dating 17 years ago.
In 2013, Lance, then 45, was diagnosed with frontotemporal dementia, an extremely rare form of dementia caused by damage to the frontal lobe, temporal lobe and parietal lobe in the brain.
This particular type of dementia causes behavioural and language problems, and Adele says the disease has left him like a nine-month-old, unable to speak, wash, dress or feed himself.
‘I’ve become his full-time carer,’ admits Adele from Brailes in Warwickshire. ‘When we first met, I never expected our lives to take this route.
‘I met Lance through his sister, who was a friend of mine. I liked how funny and cheeky he was.
‘When we became a couple, we had so much fun together. Lance hated sitting still and liked to be outdoors. We’d holiday in Crete, Rhodes or the Maldives. Lance loved to explore and go snorkelling or scuba diving. We just adored spending time together and seeing the world.
‘I was a travel consultant and Lance worked hard as a steel erector. We had busy lives, but we always made an effort to spend quality time together.
‘Those butterflies you have when you first meet someone you like – well, I had those every day with Lance.’
Adele recalls that it was in 2010 that she began to notice a change in him.
‘He seemed to lose interest in everything,’ Adele explains. ‘That wasn’t like Lance at all. He just didn’t seem himself. I kept asking him what was wrong, but he just told me that I had the problem, not him. It really drove a wedge between us, and I was terrified that our relationship was breaking down. Then Lance began making silly, careless mistakes at work. It was just so out of character.’
Lance went to a see a doctor
‘When we first met, I never expected out lives to take this route’
and was diagnosed with depression. But antidepressants did little to help, and his behaviour got worse. He’d switch the light on and off repeatedly and would go walking for two hours a day.
Eventually, Lance was referred for tests, including a CAT scan, blood tests, lumbar puncture and memory tests.
In May 2013, his dementia diagnosis was confirmed.
Frontotemporal dementia is thought to account for less than 5% of all dementia cases, and it usually affects people between the ages of 45 and 64.
With no cure or treatment, Adele and Lance were warned that Lance’s behaviour would get worse, and that he had two to eight years to live.
He started walking more and more – up to five hours a day – and often on his own.
‘Straightaway there was a ticking clock hanging over us,’ Adele says. ‘We didn’t have time to dwell, we just had to get on with it.
‘A few months after his diagnosis, Lance and I agreed to donate his brain to research after his death. If we can help to find treatment or a cure for dementia in the future, then everything we’re going through now will have a purpose.’
After his diagnosis, Lance gradually began to lose his speech, and, just six months on, he completely lost his ability to communicate.
‘It was heartbreaking knowing I’d never have a proper conversation with him again,’ Adele says. ‘But I couldn’t focus on that.
‘Lance developed repetitive behaviours such as pacing the room, rearranging his DVD collection and watching children’s TV programmes on repeat. The disease also affected his ability to do everyday tasks like dressing himself, brushing his teeth and feeding himself. He seemed to regress and become a child again.’
In October 2016, Adele gave up her job to become Lance’s full-time carer.
She says, ‘He had a lot of energy, so I tried to make things fun for him. I got him a ball pit to have in the living room and a mini-trampoline. We had such a laugh playing together, and I found my inner child, too. Lance and I used to laugh all the time, so I’m glad we’ve not lost that.
‘These days, Lance can only walk with the help of two people. He still likes playing with toys and loves drawing shapes on his Etch-A-Sketch.
‘I think laughter is so important. If we didn’t laugh, we’d cry. It’s helped me to stay positive and get through each day.
‘I know one day Lance will be taken from me, and it breaks my heart. For now, though, he’s still here. And, every now and then, when I hear his giggle or see that familiar mischievous look in his eyes, I’m reminded of the man I fell in love with.’
‘Every now and then, I’m reminded
of the man I fell in love with’
Lance can’t communicate or look after himself, so Adele is his full-time carer
Adele and Lance before the diagnosis
Now Lance’s disease has left him like a baby of nine months old
Lance had always been an adventurer