Arlene Phillips' father, Abraham, was in his late seventies when he began displaying symptoms of dementia. “He would get lost,” remembers the director, choreographer and former Strictly Come Dancing judge. “He would end up at my door two hours later than he had been expected — and he didn't know where he had been.” Unfortunately, Abraham didn't believe in going to the doctor. “It wasn't possible to get him to see his GP, even on the pretext of something else,” says Arlene.

Abraham was a well-read man who loved walking and good conversation, and his deterioration was painful to watch. As the disease progressed he would think people were in the house, that someone was stealing his money and that he was being followed. “I thought I was helping by telling him that these fears weren't real,” says Arlene. “And couldn't he understand that they weren't real?”

As a result, she says, huge arguments developed, which she regrets. “There are gentle things you can do and say to move yourself into their world: 'My goodness! Well, let's look for the money together... I'm sure it must be behind the sofa... No, I don't see anyone outside.' I didn't know anything about that.” Finally, Abraham was incapable of doing anything by himself and needed full-time care. He had lived with dementia for 10 years, dying aged 89.

 

Talking about dementia

 

Now, as Ambassador for the Alzheimer's Society, Arlene is determined to talk about the disease, her own experiences and the mistakes she admits she made. She finds that people also bare their souls to her. “One woman told me that her husband had Alzheimer's and repeated the same thing over and over again, to the point that she wanted to jump up, slam the door and run away,” says Arlene. “She asked: 'How do I find the patience?'

“I remember that my daughter was a feisty child and it would have been so easy to have lost it with her. Just at the point when I was about to explode I would take a deep breath and walk away for five minutes.” It's the same in dealing with dementia, she says. “You need to do anything to put yourself in a calm situation, and then go back with a smile on your face. It's all you can do.”

Dementia used to be a disease that was swept under the carpet, says Arlene. “Now it's much more in the open. Many people who are caught in the midst of it are beginning to understand it, because there are dementia friendly organisations they can call upon. As a whole, though, I don't think there is enough understanding of the big picture yet.

“And the more understanding we have, the better and closer we'll get towards helping people with dementia.”