Dementia in Literature | Disability Diaries

I wasn’t quite sure how to write this post, when I first got the idea. I want it to be informative and concrete, but at the same time respecting the privacy of my family. Like I’ve mentioned before, I personally do not have a disability (so I’m an able-bodied person, if you’re not familiar with the term). Yet there are quite some types of disability I’ve come in contact with growing up: cancer, diabetes, etc.

One of those disabilities is dementia. I don’t want to go into detail here, because I feel like it’s not my place to do so. I want to respect my family’s privacy. To understand why I’m writing this though, I will tell you that someone in my family suffers from dementia.

Before this happened, and the symptoms started rearing their heads, I didn’t really know much about dementia. I’m assuming a lot of you don’t either. We recognize terms such as dementia and Alzheimer’s disease, but do we truly know what they are? They’re not the same at all.

Dementia is an umbrella term for a decline in mental ability severe enough to interfere with daily life. It’s a syndrome (a wide range of symptoms), not a disease, and there are many forms of dementia out there.

The two most common types of dementia are

  1. Alzheimer’s disease, which causes problems with memory, thinking and behavior. It worsens over time, and there is no cure -at least, not yet.
  2. Vascular dementia, which occurs after a stroke.

Most forms of dementia are progressive. The symptoms start out small, such as forgetting where you placed certain items or having difficulty learning new information, and get gradually worse.

There is this tendency in the world to just lob everything under the term of dementia or aging. Dementia symptoms are often seen as just a normal side effect of ageing. They’re not. Losing memories, changing behavior radically and the way you think are not part of ageing. On the other side of the coin, many other disabilities or syndromes get lobbed in the dementia category. For example, in my family someone has Parkinson’s. That’s not the same whatsoever. Other mental illnesses also get shoved under the dementia term, such as bipolar disorder. Misdiagnosing these disabilities and syndromes will neither help the patient nor those caring for them.


disability-diaries-dementia-experiences

Today, I’m talking about my experience with dementia, and that includes vascular dementia. There are really two sides to living with dementia: the side of the person who suffers from dementia, and the people close to said person.

I can’t speak from experience about being a person with dementia. I can only imagine it to be a terrifying thing, to slowly see your memories slip away. I can however, speak from experience about being close to someone who suffers from dementia.

It is an incredibly difficult thing. Dementia can not only affect your memories, but the person you are. It can start so small, with a person saying something completely out of character or context. And it can progress so quickly, that in a year that person will hardly recognize who you are.

It is so difficult to see a person you love so much, lose themselves so completely. When they forget the experiences and memories that made up so much of their lives, their personality changes too. Because you are formed by your experiences. Some return to childish behavior, like breaking stuff on purpose. Some get slurred speech, which makes it almost impossible to understand them.

After a while, it’s very possible that the person you love so much won’t remember you. That they will look at you and be confused, because who is that person visiting me? It hurts to see total confusion in the eyes of someone you love, and not see a spark of recognition.

So I hold on to my childhood memories of said person. I hold on to the Wednesday afternoons she watched over me and my brother while my parents were at work. I hold on to the “stoemp met spekjes” she made for us -which is basically mashed potatoes with spinach and bacon mashed in. I hold on to the countless of cartoons I watched while sitting on a cushion on the floor. To the spaghetti she made, which was always quite salty. To the strong woman who raised three children on her own, and kept a small farm (kind of) in a time where none of that was as “easy” as it is now. That is the woman I remember.

disability diaries dementia in lit.png

In the past few years, I’ve thought a lot about dementia. And I want to share some of that with you.

I think it’s incredibly important to portray dementia in literature. Reading about the experiences is not only useful for those working with patients with dementia, or family members. It’s important for everyone. It can mean noticing the signs early on, which gives the doctors a better chance of fighting it. It can mean knowing what to do once you do start showing symptoms, and how to talk to your family about it. It can show you ways to deal with dementia, or how you’re basically grieving for a person who is still there, but isn’t.

this is where it ends

I can only think of one book I’ve read that features a person with dementia, and that is This Is Where It Ends by Marieke Nijkamp. It’s not one of the main characters though, but the mom of one of the students in the book. She’s slowly forgetting so much, and Sylv is doing all she can to care for her.

For a syndrome that is SO prevalent in our world at the moment, it is sorely underrepresented. Especially in YA and kidlit. So I’m going to try and read more about it. Read more fiction with dementia in it. Here are three books, I want to read in 2017.

disability-diaries-dementia-tbr

 

The Memory Wall: Severkin is an elf who slinks through the shadows of Wellhall’s spiraling stone towers, plundering ancient ruins and slaying mystical monstrosities with ease. He’s also a character in a video game—a character that twelve-year-old Nick Reeves plays when he needs a break from the real world. And lately, Nick has really needed a break. His mother had an “incident” at school last year, and her health has taken a turn for the worse.

The Memory Wall is a MG/YA book, and I believe it talks about dementia -or Alzheimer’s specifically, I don’t know. It’s so far the only one I could find.

Still Alice: Still Alice is a moving and vivid depiction of life with early-onset Alzheimer’s disease.

Still Alice has also been turned into a movie, so I want to watch that one too. This isn’t a kidlit book, but an adult fiction one.

Hersenschimmen: This is a Dutch book that follows Maarten, who is quickly losing his grip on his memories and reality. This is a book about dementia and love, as I believe it also has a focus on his wife -who he sometimes doesn’t recognize.

Have you read any books about dementia? I would really like some recommendations from you all, whether it’s kidlit or adult.


Don’t forget to check out all the other posts by the other hosts, Ely @ Tea and Titles, Cee Arr @ Diary of a Reading Addict, Dina @ Dinasoaur, Angel @ Angel Reads, and Lara @ Another Teen Reader.

Sources I used:

http://www.alz.org/what-is-dementia.asp

http://www.alz.org/alzheimers_disease_what_is_alzheimers.asp

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26 thoughts on “Dementia in Literature | Disability Diaries

  1. I have 2 close family members who are enduring dementia/alzheimer’s and it’s very hard for them, as well as for those of us who are close to them. I read Still Alice and also watched the movie and I recommend reading first, then watching the movie. However, one caveat is to make sure that you have time to process how you feel afterwards as it hits home quite strong. If you need a friend, I’m here. We’ve been dealing with these diseases for over 2 years so it’s a challenge and because I have 2 family members, they are progressing in different ways. Just take one day at a time. ♥

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  2. Hi Jolien – I sincerely admire your initiative! I’ve been looking for good books about/featuring dementia or Alzheimer’s. Am currently reading “We Are Not Ourselves” by Matthew Thomas, beautifully written story about a family, and living with a father/husband who has early-onset Alzheimer’s.

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  3. I am so, so glad I read this post, Jolien. Thank you so much, because without it, I don’t think I ever would have realised how underrepresented dementia is in lit – or even that I actually know very little about it. I’ll be having a look at all these books for my TBR,

    Thank you for opening my eyes to another side of disability.

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  4. This is such an amazing post, thank you. I really respect your openness and willingness to share your experiences with dementia. I know how scary it can be to reveal such personal stuff to the internet.

    I honestly don’t think that I’ve ever read a book that talks about dementia, which is such a huge oversight. Thank you so much for the recs, I’m going to check them out immediately ❤

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  5. This is an amazing post. *hugs*

    Have you read Sisterland by Linda Newbery? It’s one of my favorite books, and is about a girl whose grandma has Alzheimer’s. It’s very diverse in a lot of other ways, too.

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  6. Jolien, thank you for writing this post ❤ I know dementia is a fuzzy concept for me, that I've never really known what it truly is, so I really appreciate hearing your experiences with it, and your explanation of what it is, and more. These kinds of posts really help raise awareness, and it was wonderful reading yours and understanding more about dementia! I'm glad that #DisabilityDiaries2017 is happening, to understand more and more about all different kinds of disabilities.

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    • Thank you so much for reading my post, and leaving this lovely comment ❤ I think it's so important to all tell one another about the experiences we've had so others can learn. There are so many things I don't know anything about, and I always love reading about them. I'm also so glad #DisabilityDiaries2017 is happening 😀 I've learned loads already! I'm glad I could help you a bit regarding dementia 🙂

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  7. Jolien, thank you so much for writing this post and for also talking about your experiences. I’m sorry to hear that happened. *hugs* I had a family member who had dementia – not close – but I felt the ripple effects of her illness. It was so sad. I currently work (though not for much longer) in healthcare, and so many of our patients are old and some have dementia. Communication becomes such a struggle, especially for the person with dementia, but it’s not their fault.

    Anyway, thank you for talking about this. We need more awareness about dementia, esp because of our aging society. I’ve read Still Alice and it’s a very heartfelt, emotional book. I hope you enjoy it. ❤

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  8. Thank you for sharing this post and also for sharing your personal experiences <3. I have an aunt who has dementia. Hers is Alzheimer. Her memory is gone now and I know how tough it is not just for her but also for her loved ones especially her kids. Unfortunately, Dementia is not very well known here and for so long people have assumed that the symptoms especially for Alzheimer are just signs of old age. I hope that more awareness will be raised over time.

    In literature, the book/movie that comes to mind id The Notebook by Nicholas Sparks. I think one of the main characters, Allie had dementia at the end.

    Liked by 1 person

  9. I’m sorry, I can only imagine how tough it must be to have someone you love start to forget like that. I believe one of my family members had dementia, but she wasn’t someone I knew very well. You’re right though, I haven’t seen many books out there that include dementia. I know Pale Highway by Nicholas Conley has dementia in it, but since I haven’t read it I can’t say how realistic it is or anything since I think it’s also sci-fi or fantasy or something.

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  10. I think a family member of mine may be going through the early stages of dementia and I am at a loss for how to approach talking about it, even with my family. I feel like it’s something we all know is happening, but are trying to ignore it. I know that your experience with it is with someone in your family and I was wondering if you knew if there is anything I can do. All I know is that it is painful to see and It is breaking my heart. Thank you for this post. I’m sorry for letting all this out to you, but I really don’t know what to do. I’m sorry that you have someone you know going through this, it really is painful to see.

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    • Don’t worry! I am here to talk about it. I know it is such an uncomfortable topic. And it’s sensitive to address. But your family needs to get together and set some time specifically to talk about it. It’s not going away, and it will only get worse. So while the person is still mostly lucid, you need to talk about their care and their wishes. Because afterwards they may not be able to… For example, my family member is now in a nursing home because she could not stay home alone anymore. She always had accidents while we were at work and couldn’t get there… It’s the worst thing to talk about, but it will only get worse if you delay it… Sending you lots of hugs! ❤️

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