What’s it like to have dementia?

What are the major misconceptions that people have about what it is like to experience dementia?

The only people who really know what it is like are people with dementia and they have interesting stories to tell.  They are more likely to report it verbally at the early stages, but you can often communicate with a person right to the end and they can tell you how things are through non-verbal communication. One misconception that disconcerts me is the film mock-ups that we see where the screen is muddled and misty.  I think it is just very hard to give a visual representation of what it is like, and the worry about trying is that you over simplify it and make people imagine that it is like that for everyone, when it is not. 

White noise or headphones might be used to impair hearing and cause stress, but does that really cut it?

I have my doubts about immersive experiences that are sometimes put on for care staff to help them empathise with a person affected. The staff may be given goggles smeared with grease to impair their vision, and have pebbles put in their shoes to make walking difficult. Their hands may be bound or they are given gauntlets to wear that seriously impede their dexterity making it likely that they’ll drop things or not be able to manage a cup or spoon. White noise or headphones might be used to impair hearing and cause stress. It’s all very disconcerting and would make you sympathise with any stressed person, but it’s wrong to think that any one person with dementia experiences these particular sensory or physical impairments. Some of my friends with dementia walk, hear, and see better than me. They just can’t make sense of things or communicate like they used to.

“..it’s wrong to think that any one person with dementia experiences these particular sensory or physical impairments. Some of my friends with dementia walk, hear, and see better than me. They just can’t make sense of things or communicate like they used to. ”

One woman said to me that she sits with her tights and discovers after a time that she’s not put them on.  An observer might think that she’s forgotten how to, or forgotten that she means to, but in fact she says it is as if the time took a loop and passed by, and she just had not yet done it.  It reminds me of the way sometimes we don’t think about raising our hand, but it just goes up when we mean it to, and with new prosthetics people can make a prosthetic arm go up by willing it.  The connection between our will to do something or our intention and motivation is a complex philosophical and psychological and neurological puzzle, and the idea that not being able to do it any more is “forgetting” just does not cut it.

Terror, anger, embarrassment, and emotional responses

Often people speak of terror, anger, embarrassment, and emotional responses. People fear it more than cancer, but I wonder if what they fear is the “idea” that they have been given in the media about dementia, or if it is the devastating financial cost of dementia, the fear of dependency, or the fear of decay and dying because it is a fatal illness.  Or even more certain, I think that people are afraid of bad care.  I’ve often said I’m not as afraid as other people because I’m sort of prepared for what is coming.  Remember in all of this that dementia is not the disease, it is the symptom, and the symptoms can be made better or worse even if you can’t halt the disease process. How can you stay as well as possible? To stay well with dementia you need to avoid stress, be well hydrated, take exercise, be distracted with interesting things, have pain control for other conditions, avoid constipation and sleep well (among other things).  There’s more on this website.