Caregiver Dementia by Edyth Ann Knox

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"I have heard of something called 'Caregiver Dementia.'"

"Is Alzheimer's contagious?"

No, Alzheimer's disease is not contagious and despite any and all episodes of forgetfulness, misplacing the keys, etc. let me assure you, you have not contracted the disease from someone else.

Caregiver dementia is not a medical condition, at least not one to be found in the medical journals, yet. Read Edyth Ann's article and you will see what I mean. It's hard to read this piece and determine at which point Edyth Ann's tongue leaves her cheek and her advice becomes serious. Is there really such a condition? Do caregivers honestly think they are coming down with Alzheimer's disease (AD)? What are the telltale signs and what should you do?

Here's what Edyth Ann Knox, who, in my opinion, deserves her Ph.D. in caregiving wrote.


Caregiver Dementia (CD)

Edyth Ann Knox

Caregiver for her mother-in-law, Millie and father, Tex, 
both with AD

In the past few months you may have heard me or someone else mention the term "CD". Many of you, who are not familiar with the acronym, may be wondering what CD stands for. Well, it means Caregivers Dementia.

We started using this term in our Virtual Carer Support chat room in 1997. I am not really sure which one of us actually came up with the term. Regardless, it is one of the things that keeps coming up whenever you have two or more caregivers under stress talking to one another.

It is not unusual for the caregiver of someone with dementia to feel like they too are living in a fog. They may have trouble remembering names or forgetting (mid-task) what they are doing. Let me assure you this is perfectly normal caregiver behavior. The condition is not the onset of AD, but more likely due to the exceptional, yet unrealized, stress level, involving loss of sleep and self neglect, typical of caregiving. The moment we realized this, was the moment the term CD was born.

Finally, we, the caregivers, no longer had to worry about showing suspected signs of AD; our condition now had a name. Though, not to be found flipping through the pages of any medical journals, CD is not a chronic or untreatable condition. Yet it is one familiar to many caregivers. And as more caregivers mention it in their support groups, the term seems to be catching on.


"Because I have CD."


Once and for all, it is a great relief to be able to give the over-stressed condition and lagging mental state that we caregivers inevitably experience, a name. We no longer need to wonder if we too are losing our minds. It is very reassuring to know that eventually normalcy will once again return.

We no longer have to be concerned about forgetting a name or pouring our coffee into the sugar bowl, instead of our coffee cup. And if I want to sit in the middle of the floor playing jacks or go singing and skipping down the street, I can, ... because "I am suffering from CD. Now when I am tired, grumpy or tending to over react, I have a reason. It's okay to go to bed, because I have CD. Finally, I can actually let others care for my loved one (LO), because I AM SUFFERING FROM CD (and believe me this is very important).


The Early Stages Not to Worry


Treatment for CD depends on what stage of CD you are in. In the early stages taking time to get some extra sleep and eating a little better may be enough. You may feel a little tired or need to pause for a moment to recall a fact, name or what you are doing, but you are still able to remember it. In other words, you are still in a relative good state, just feeling little slower.


The Middle Stages When you beginning to think it's AD


The middle or moderate stage may require more attention to remedy. By now your concentration may not be as good and you may notice that you are more easily distracted. You may also totally forget a name, place or what you are doing and now not remember it, even after a few minutes. This is where you may begin to wonder if you are, in fact, developing AD.

Once your reach this advanced stage, you need to take steps to treat the condition. This may include taking an evening off or even renting a room for the night. Perhaps you should take heed and be careful that you are eating right. And it might not hurt to consider drinking a nutritional supplement, like Instant Breakfast, along with your LO.

At this stage it is a good idea to step back and find yourself a quiet corner. Designate it as "off limits to everyone else. This is your respite zone and when you are there, you are not to be disturbed at least for a half an hour. Take a good look at the burdens you are really carrying and take steps to lighten your load. Be good to yourself, after all, if something happens to you, who will care for your loved one?


The Advanced Stages - Time to Take a Stand


Failing to recognize and treat the middle stages of CD can lead to the more advanced stages. At this time you may really believe that you are developing AD. You may no longer be able to concentrate on anything; it begins to feel like there is fog all around you. You may find yourself forgetting if you are putting food out for the cat or setting the table for dinner. You become very moody and feel like you may be losing your mind. At this point you may even be physically breaking down, becoming sick, and not even realizing it.

Now you need to take stronger measures to care for yourself. You definitely need a break, for the well being of both you and your loved one. If this sounds familiar, you need to re-evaluate your caregiving situation. It may also be time to consider other care arrangements for your LO.

CD has now become very real and no longer funny. Unrecognized and untreated it can become serious. But when you acknowledge it and treat it, you can also recover. Give yourself permission to be human - to forget people's names or even your own for that matter; to be a little off center (as long as you are not jumping down everyone's throat), and to remind yourself where you are. Give yourself permission to enjoy life and let things go, as long as you remember to take care of yourself.

I want to make it very clear that I am not a doctor, nurse or medical professional of any kind. I cannot make an official diagnosis or prescribe treatment. My knowledge comes from experience. My hope is that some day someone will realize that our loved ones with AD are not the only victims of the disease, both emotionally and medically. There really is something called CD. It has real symptoms and warrants real treatment.

Ironically, treating the caregiver, may in turn also benefit the person with AD. I believe that paying more attention to the caregiver may even possibly reduce the need for some of the medications given to the patient. Logic tells me that a healthier caregiver will be better able to deal with the AD behaviors of their LOs and allow them to make better decisions. I would also like to point out that this does not only apply to at-home caregivers, but also healthcare professionals and nursing home staff alike.


Edyth Ann shares a unique insight and comes from a caregiving world that few of us who haven't cared for another know. From her wisdom and incredibly giving heart comes knowledge that benefits the entire caregiving world. She may not realize how many people's lives she is touching, but nonetheless we are all better off by her willingness to share and enlighten us all.

If you would like to contact Edyth Ann her email address is edythann@netzero.net
She can also be found hosting two wonderful chat rooms for caregivers caring for loved ones with dementia. Here is information describing them and links to the sites.

The Virtual Carer Support Groups
http://dementia.ion.ucl.ac.uk/candid/chat.htm
Mondays: 6 PM US Pacific Time (9 PM Eastern Time) (2 AM GMT)

ElderCare Online's Elder Caregiving Chatroom
http://www.ec-online.net/chat.htm
Thursdays: 9:00 to 11:00 PM EST Bubblehead's Chatroom

And finally, just a few words to emphasize how serious caregiver dementia or caregiver stress may actually be. In all likelihood you may not see it coming. Overwhelmed with caregiving issues, it can sneak up on you. No longer do you go for walks anymore, you haven't spoken to your friends in months. You suddenly ask yourself, "What's happened and when did it happen?

And the longer you ignore the signs the more serious it becomes.