How early onset dementia robbed one North East woman of her loving husband

As the Oscar-winning film Still Alice shows the impact of early-onset dementia, Alison Davidson explains how it affected her family

Julianne Moore as Alice Howland
Julianne Moore as Alice Howland

The warning signs were there for years before my husband’s dementia diagnosis.

I must have noticed that something wasn’t quite right when he was 45. They were just little things like he’d forget my birthday. Overall he just lost his spark.

He had loads of interest in music and films and that just vanished. And then back in 2001 he had an episode of depression for six months. He used to drink all the time. It was so sad. Then he came out of it. But I reckon that was the start of it.

He used to play football with his mates but that stopped because his team-mates would shout at him because he wouldn’t pass to the right people. It was obvious to his friends at five-a-side that something was wrong but you’re not going to think of dementia.

He was 49 when they told him he couldn’t work any more. But two years before that he had trouble at work when his work began to slip.

He ended up being demoted and was on the sick with stress. He was a care manager but he stopped filling in his nursing notes properly and attended meetings unprepared. Things were flagged up quite early and everyone thought he had depression and stress, which he didn’t.

Little by little everything was taken off him. Our marriage wasn’t great because he was forgetting everything and he was getting scruffy. It ruined everything.

He lost everything but I don’t suppose he was a typical sufferer.

A brain scan confirmed dementia. He was 50. They won’t diagnose someone who’s 50 unless there is a brain scan. They want physical evidence.

In the end it would be just devastating on every level. I lost my husband and the children lost their father. He had two scans which showed nothing, but the third showed shrinkage of the brain.

By the time, though, that he was diagnosed and got medication, he was well on his way. But you are in the system so a diagnosis did help. It removed the uncertainty but then our lives became a nightmare.

When he was in the care home he had these bizarre delusions. It was a psychosis. He would ask women to marry him and strange things like that. He’d say you’re not my wife and they’re not my children.

I don’t know where that came from. I used to laugh at first. He wasn’t a Casanova that had kids all over the country but he was obsessed with that.

He ended up being sectioned, initially because he assaulted care home staff. He threw a telly across the room in his care home.

He had to be sectioned initially because it was a case of taking someone against their will in handcuffs. When it was rescinded they didn’t bother renewing it because he didn’t ask to leave. If he had been sectioned he would have had a lot more rights because there is a complex legal framework around being sectioned.

The reason I feel so strongly about it is because people do not look upon dementia as a terminal illness. I realised he was going to die quite quickly so I wanted him to go out to the pub with his friends and he never got to do that, which is a major deprivation of liberties.

He could not ask to go out at all because he had no way of telling people that.

But I know he would have liked it. To me that would not have happened to anyone else.

If he had been sectioned you would have had free Legal Aid and people speaking up for you and they would have said ‘I want this gentleman to go out once a week’ and it would have happened.

He didn’t even go out of the ward. There was a little garden they must have spent a fortune on and hardly anyone got out into it and the only reason he did is because I made sure of it. I would sit and have my dinner outside with him.

I have worked in dementia wards but when you go into the dementia units you think this is awful.

It is like how people with learning disabilities were treated during the ‘80s – with loads of wards with lots of very noisy people with challenging behaviour altogether in one place.

I once said it was like a scene from One Flew Over the Cuckoo’s Nest and I got into trouble.

I was told I shouldn’t be saying things like that but it is true.

It upset me so much because he was locked in, he didn’t go out. It was incredibly noisy.

They tried their best and I had a good relationship with the staff but it was very busy and no one got out.

He deserved better. He could have gone out every week for the last six months of his life.

He came home for the final five weeks and he was absolutely fine. He smiled and had a very peaceful time.

When he was at home I took him out and he was absolutely lovely. This time I was able to say goodbye.

There are almost 35,000 people living with dementia in the North East. Anyone who needs advice should contact Alzheimer’s Society dementia support workers on 0191 2983989.

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