Dementia, the disease with two deaths
Laura Banner

Laura Banner

Family Nurse Practitioner, Dementia Trainer & Advocate,
Keynote Speaker (Available for speaking engagements on Dementia)

Dementia, The Disease with Two Deaths

Alzheimer’s and other types of dementia are often referred to as the disease that has two deaths. Unlike other diseases, when someone suffers a horrible course and then dies, their death is definitive, loved ones have closure, there’s a specific point where you can look and say, this is the day that my loved one passed. But dementia and Alzheimer’s are different. 

Those of you who’ve been through this know exactly what I’m talking about, but in case you haven’t ever experienced it, let me tell you what I mean: When someone has Alzheimer’s or dementia, they get to a point where they really are oblivious to the world around them, the term that I use for it is crossing over, it’s when they transition from our world, and being part of it to their own world, where they seem completely removed from everything going on around them. They no longer recognize their loved ones, and relationships are different; they may be able to recognize someone close to them as someone who provides care and comfort, but they can’t comprehend the relationship, they don’t recognize that person as their spouse or their child, or their close friend; they just know that that person is there and is always available for them, and they usually want to have that person within eyesight, because when they can’t see that person, they become distressed.

It’s not something that we see in the early stages of dementia. It’s in the latter part of the disease, and oftentimes, they’ll have a nonsensical speech. They seem to understand what they’re trying to say, oblivious to the fact that those around them don’t understand what they are saying. It may be just a string of words; they really mean nothing to us, but makes sense to them.

Surprisingly, they’re usually happy at this point; they’re free from suffering, the knowledge that they’re losing their memory, their identity. It’s when they are able to be content with what they see, what they understand, their needs are simple, and they are surprisingly at peace. Unlike their loved ones who’ve just experienced the first loss of that loved one.

Because although we can still see the person and their voices unchanged, their mind is not the same, they no longer share memories, they no longer can participate in meaningful conversation, and even though they still have the same basic human needs that we need and have, they’re different.

In many ways, at this point, they are almost childlike, I believe, or at least I choose to believe. For them, the suffering is over; they no longer have the awareness that they have dementia, unlike their loved ones who get continuous reminders that they’re slipping away little by little every day.

But I tell people to gain comfort in knowing for their loved one the pain is over, but at the same time, the amount of weight on those left behind is ever increasing. It’s such a horrible, horrible disease. I can’t think of many others that are is torturous, not only for the person suffering from it but also for the loved ones who witness. Again, unlike other diseases, where you have final closure, Alzheimer’s and dementia. Again they have these two deaths. The first day of mind and the second, of the body. Usually separated by several years, though, surprisingly, when people crossover, They don’t all act the same. And there doesn’t seem to be any predictors at least that I can identify that will give a clue as to how the individual will be when they’re on the other side. What I mean is, sometimes, the mildest mannered people in their usual healthful state can become very aggressive, and almost, dare I say hateful. They can have sharp tongues and say things that we know they truly don’t mean but nonetheless still hurt and pierced our hearts.

You can also have someone who, when they were a healthy individual, perhaps, was a bit aggressive, perhaps argumentative hot-tempered, and when they cross over, they become meek and mild and passive, calmed. A direct contrast to what they were like before, and then, of course, you have people that remained the same as they were in their healthier days, just without the memory and without the ability to communicate effectively. And again, it’s fascinating to me that there does not seem to be any predictor in how someone will be once they cross over. This is when we really become challenged. Because once they’ve crossed over, and they withdraw. We, as caregivers and loved ones, we no longer usually receive the much needed “I love you,” “I know you’re here to help me,” a kind expression, or even a gesture of recognition as to who you are and so in many ways, it’s as if we’re caring for a stranger, a stranger who mimics a loved one in books alone. And I can’t imagine anyone’s prepared for that.

So with each stage of Alzheimer’s and other dementias, there are new challenges for the caregiver. I truly believe that when their loved one crosses over, is when they are really faced with the greatest challenge of all, only to be concluded with the second death of their loved one.

And most people will say that by the time that second death arrives, there’s a sense of peace. Certainly a sense of loss, but they’ve been having that sense of loss for quite some time. And usually, as much as it hurts, they’re ready for their loved one to go because they know the journey they’ve been through, and they know that no longer will their loved one suffer in any way. It’s such a sad and tragic disease, as they all are. I’m not trying to say that others are not. But as if the death of a loved one is not horrible enough to go through it twice, challenges us all, far beyond what most people ever thought they were capable of.

If you’re a caregiver or family member or loved one of someone with Alzheimer’s or some other type of dementia, my heart goes out to you. You are my hero, and I will tell you. You will need support. You need that village, you need a group of people who are there to help hold you up. You don’t need to go through this alone. And if you don’t have a group now that you feel as though you can pick up the phone and vent to, and cry with, get advice from, or a group that can give you that opportunity to have that much-needed laugh, then search now, you probably feel as though your plate is full and you just don’t have time with all of your caregiver needs to search for a support system, but trust me when I tell you, it will be what gets you through this dark time, people are there, and sometimes, even though they haven’t offered to be there for you and to help you, it’s only because they don’t know how to bring it up, but with a simple question or a request coming from you, those that truly love you and care about you we’ll be more than happy to be there for you.

Anyway, I wish you well. I hope this is not what you’re going through. But the fact that you’re listening to this podcast tells me it probably is. I want you to know you are not alone. Reach out. Anyway, I hope you found this information helpful if for nothing else to know that others are feeling what you’re feeling, check back often. I release new podcasts every Tuesday. It’s always on some topics related to dementia. I welcome your feedback. If you haven’t subscribed, please do so. So you’re notified with the release of every new episode. You can also find me on Instagram @compassionate_education. And my website, Thanks so much for listening.

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