This is not like the dementia you see on TV or the movies: What it’s like living with Lewy body

Now, having lived with dementia for several years, I can share that one of my greatest concerns is not my memory loss. This is what it is instead.

In 2012, at age 59, I was diagnosed with younger onset dementia, likely to be Alzheimer’s disease. 

Since the onset of other symptoms, it now seems likely that my diagnosis is Lewy body dementia.  

Now, having lived with dementia for several years, I can share that one of my greatest concerns is not my memory loss, but my inability to have a good night’s sleep.

A common effect of Lewy body dementia is disturbed sleep and it’s been a big challenge for me since my diagnosis. 

I generally get off to sleep easily enough, but I find it difficult to stay asleep and I now experience what I call, vivid hallucinations, when I am half awake, and often I act out my dreams.

Ann Pietsch found her sleep was affected by dementia.

The first time this ever happened - I will not sugar coat it - I was really frightened. 

I felt the presence of a black round thing, like one of those exercise balls with spikes.

It kept appearing in my dreams and coming towards me, like it was trying to scare me. 

From then on, my sleep and what I thought were hallucinations, developed into other forms of feelings and seeing things. 

I can’t remember the last time I slept through the night. 

This is not what is commonly thought about concerning dementia – not what is seen on TV or in the movies.  Dementia has many different symptoms as well as memory loss.

I feel constantly tired so it’s often hard to do more than one thing requiring effort in a day.

Sometimes when I get up in the morning I need to go back to bed after breakfast for a little while, although I try to not sleep during the day. 

I don’t have a set strategy about dealing with disturbed sleep. 

However, I have now got used to functioning on less sleep than normal. 

If I have had a particularly frightening night, I can feel fuzzy the next day and I won’t feel like going out at all, but sometimes I will force myself, as I know that social interaction is good for me. 

As well as my struggles with sleep, other key challenges I face living with dementia include my poor balance, bumping into objects, and visual changes (it is harder to focus on objects).

I have lost my taste and sense of smell to a certain degree. I am finding that my short-term memory is not as good as it was, and word finding is becoming more difficult.

I live with my husband, Timothy, who is very supportive, and he encourages me to live a full and worthwhile life. He and my family and friends are vital in enabling me to live well with dementia.

I’m involved as a dementia advocate in a lot of committees, nationally and internationally, which helps keep my brain active.

I am an advocate for Dementia Australia and a member of its advisory committee. 

Through this I have contributed to the design and review of research projects, parliamentary reports, and dementia policy. I have influenced the development of programs and services,

and helped raise awareness through the media and public speaking. 

Living with dementia is not always easy, and my sleep problems are not what I envisaged.

But it is important for me to get up every day and do things which bring meaning to my life,

despite my diagnosis. I

aim to live as well as possible, and to show others that they can do

the same. I live a rich and full life, living well with dementia.

If this story has prompted any questions or concerns, please call the National Dementia Helpline 1800 100 500 (24 hours, 7 days a week) or visit dementia.org.au.

Originally published as This is not like the dementia you see on TV or the movies: What it’s like living with Lewy body