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

Woman's Weekly (UK) - - Hello! -

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

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