16 Things You Didn't Know Happened In Dementia

    You think of dementia as involving memory loss and confusion. But there's a lot more to it than that.

    Hallucinations are a common symptom of some kinds of dementia.

    Jo Bennett, 60, who has early-onset Alzheimer's, sees "black holes" in her bathroom tiles: "My brain tells me that those square black tiles are in fact holes that go right down to the bottom of the earth and you mustn't drop anything near them because you'll never see them again." More alarmingly, they sometimes appear when she is in the passenger seat of a car: "All of a sudden there's a big black hole. You know if you drive over it it will go to the bottom of the earth. I have to look out the side window and bring my knees up to my chin as I'm terrified I'll grab the steering wheel."

    James Tomlinson from Bedford sees ghosts: "It's just frightening. I get hallucinations where I think there are ghosts living in our garden. But my world seems to take on several dimensions. So I don't know which house I'm in."

    Carol Ovenstone from Glasgow was misdiagnosed with psychosis because of her hallucinations and spent three months in a psychiatric ward: "They decided I had a psychosis because I was hallucinating, but after three months they told me I actually had Lewy Body dementia."

    It can cause trances – and depression.

    Paul Hitchmough is an amateur musician and sailor: "I have a condition due to my Alzheimer's called 'induced meditative state', a neurological type of thing. I just go into a transit – it can happen any time.

    "[The first time it happened] I was on the helm of a boat steering, I went into a daze and steered the boat away from its course headed towards rocks to starboard in about five feet of water. I don't know how long it lasted; if you can imagine your mind going white. I just sit there until I come out of it, but when I come out of it I go into a deep depression. The black dog visits me so to speak, so I have to fight my way out of that one."

    And mood swings.

    Melvyn Brooks, who has fronto-temporal dementia: "Sometimes people with dementia behave aggressively, either physically or verbally, and this can be very distressing for the person, family, and friends. My wife's disabled, so how can I expect my wife to look after me if I become violent? I hope I never do."

    Philip Watmough: "I think I upset my wife yesterday, big-time, for the first time ever. I don't know, I lost my temper and I don't like doing that, and I'm so sorry about that, and I don't know what to do about it. Hopefully I'm not going to do that again. I presume this is dementia stuff."

    Tommy Dunne from Liverpool was misdiagnosed as having bipolar disorder because of his dementia-induced mood swings: "I'm a different person to the one my wife married. ... I can't get through to the part of my brain that wants to her ask her how she is, give her a kiss and a cuddle." He says that people living with someone who has dementia must "be prepared for when the dementia takes over. There will be days when we are angry, and days when we forget where we are in time. The more that you understand that it's not the person with dementia that is angry with you, the more you will bear what is to come."

    Simply dressing yourself can become a challenge.

    Agnes Houston from Glasgow: "For the past two days I couldn't understand why my jammy bottoms were falling down. I thought, Oh dear, something's happened to the cord and strap that holds it up. And guess what? My brain has just been tricking me. My eyes could see the cord and I knew it should have been there. I just couldn't find it. My brain just wasn't transmitting the signal."

    Jo Bennett: "[I'm] fed up with not being able to put clothes on without them being back to front, inside out, generally higgledy-piggledy."

    Telling the time is a problem.

    Jo Bennett: "I'm absolutely, totally, pissed off that I can no longer read either of my watches; I can't read any of the clocks in the house any more." She uses her mobile phone's clock display: "I don't want to go on to a talking watch just yet, thank you very much. The marbles haven't all gone."

    It can be harder to follow sequential instructions, making cooking or packing difficult.

    Agnes Houston: "My abilities to be able to cook are steadily diminishing. ... I am losing my ability to sequence, plan, prepare, and cook. I hate packing – I pick up one thing, put it down, look for another thing, look for the first thing you put down and it's not there. You end up not knowing where anything is. You try to be logical, but you cannot be logical when you've got Alzheimer's."

    Driving – and even crossing the road – becomes dangerous.

    Jo Bennett quit driving: "I was very loath to do it, but I realised I was becoming a dangerous driver. I wasn't happy with the way I was driving. I was scaring myself. It's a real pain, not to be able to just jump in the car."

    Allan Davis from Bedford did the same: "If I had an accident with a child, and that child was killed, I would never forgive myself."

    Agnes Houston struggles to cross the road safely: "We cross the road lots of times, we don't really think about how many times we cross a road in a day. When you're crossing the road you tend to use a lot of your senses, we don't really think about it: The cars – are they coming towards you or are they going away?" It's especially tricky because she's young for a dementia patient. "People look at me and think, She doesn't look different; she doesn't look as though she's got anything wrong with her – why does this woman want help crossing the road? It can almost put you off going out."

    You might lose your thread in conversations.

    Chris Forse: "Sometimes when I speak, my mind wanders off in a totally random direction, then I totally lose my train of thought."

    Tommy Dunne: "[Words] might make sense inside your head but they don't make sense when they come out. The words come out and I think 'that's not what I wanted to say'."

    Melvyn Brookes: "The words are there… I can see the word, but it won't come out. I'm finding that very difficult."

    That can make people reluctant to talk on the phone.

    Chris Forse: "I'm frightened of being put in the position of having to answer unexpected questions – and then I feel that there is a time pressure. I can't bring myself to make these calls independently. I feel so frustrated with myself. I feel I should be able to make these calls. My mind goes blank."

    Anne MacDonald:
    "I dread dealing with companies on the phone. It's so stressful. Where do I start? I plan it all out, PIN and password at the ready. Eventually I get through to a robot with six options. Listen to all, forget the one I need, make a mistake and you're back at the beginning."

    Your hearing can grow more intense.

    Agnes Houston: "They talk about the losses you get with dementia, and yes there have been many losses, but not so with my hearing. My hearing has been heightened, almost painfully. I can be out having a meal and the noise gets louder – it's just like a crescendo, it's terrible. I can't stand it and I just want to finish the meal and get away."

    Jo Bennett: "[Live music is] absolutely brilliant actually when you have dementia – it takes all the negativity away, you just get immersed."

    You can have difficulty sleeping.

    Agnes Houston: "Dementia is more than memory. My brain and body are so tired that I can hardly cook my dinner." But she can't sleep in: "Something strange has been happening to me over the last four or five months. I'm waking up so early in the morning."

    Melvyn Brookes: "I only get a couple of hours sleep a night. Sleep pattern issues are just something I have to deal with. I often live on two hours' sleep, or less than that. Physically it's very draining."

    Anxiety gets more severe.

    Agnes Houston: "I seem to live in a state of constant anxiety, of not being able to cope with crossing the road, going shopping, having a shower. The day-to-day things have been more and more stressful and causing me panics. What does it feel like when I know that the slow progression is creeping in and getting more and more frequent? Frightening. Scary. I doubt myself."

    Reporting by Paul Myles and Laurence Ivil.

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