Most people aren’t familiar with the specifics of dementia and Alzheimer’s disease. Are there ways to remain positive in this largely depressing reality? Our guest today, Lori La Bey, is here to help us understand the 7 stages of Alzheimer’s. Enjoy the show!

 

 
 

Margaret Manning:

My guest today is Lori La Bey. Lori is an advocate for changing the conversation for dementia and Alzheimer’s. She is the host of Dementia Chats and Alzheimer’s Speaks, which are fantastic radio shows. She has a great website called alzheimersspeaks.com. Hi, Lori, I’d love to welcome you to the show.

Lori La Bey:

Thanks for having me. I’m so excited to see you and be able to have this conversation with your tribe out here.

Margaret:

My tribe has grown since we last spoke. We have got about 92 000 followers on Facebook right now, and we reach about 450 000 women around the world each month.

Lori:

That’s fantastic!

Margaret:

It is great. Obviously, we don’t know everything about everything. This is why we love to have people like you talk about topics that are of great interest to the community of our demographic. Thank you so much for the work you do and for helping us to navigate this topic.

Lori:

You are very welcome.

Margaret:

First on today’s agenda I would like you to help us understand the seven stages of Alzheimer’s and how we can positively deal with each one of them.

Lori:

Sure. I will walk you through the stages, then I will tell you why I don’t personally believe in them.

The first stage is really interesting because there is nothing to really look for. There is no certain way to detect the condition at this stage. The person doesn’t notice it, and doctors can’t find it. It’s happening up in the brain.

The second stage constitutes a very mild decline. With that, the person is going to have some minor memory loss. A typical example is losing something, but still being able to track it. It doesn’t interfere with a person’s day to day life. Also, people at this stage are still going to do really well in testing. For the most part, diagnosis at this stage isn’t possible through conversations and the typical symptoms that we are looking for.

The third would be a mild decline. That’s when the person with dementia, along with their family and friends, are going to start noticing little changes. It could be a word find, or remembering names, planning and organizing. Most of us over 60 are going to go, “Yup, that’s me!” but this is also part of normal aging.

Next stage is one of moderate decline. That is when things become more clear cut. The short term memory is more affected, so the person may not be able to recall what they had for lunch or dinner. They’re having trouble with their own life stories in terms of remembering what happened. Math seems to be a big issue, with people not being able to manage their bills or even figure out their check book.

Then the fifth one is what they call moderately severe decline. That is when the confusion becomes more significant. People can’t remember simple details like their phone number or their address, where they’ve lived for years. They may start dressing a little bit different, which would seem inappropriate or at least not weather appropriate. They may also put their clothes on in the wrong order.

Stage six would be severe decline, which involves confusion or unawareness of many things. It could be the environment or people around them. They don’t recognize places and things. Personality changes can sometimes occur. People may need help with grooming and toileting. Sometimes they can’t remember faces of close ones. There is loss over bladder and bowel control. Wandering is supposed to be a characteristic of this stage, but in my opinion, it can occur earlier.

Then the seventh stage is characterized with very severe decline. People get near death, or there’s really no recognition at all.

My mom had dementia for 30 years, and I learned a lot through that process. I speak with people with dementia all the time because I think their voice is really important. I often ask them, “What do you think of these stages?” They all say it’s good to get a diagnosis, but it’s more important to focus on the symptoms than stages.

They know that doctors and researchers have to categorize the condition, but those stages make it sound too clear cut, when it isn’t. They say that symptoms can be a lot like emotions, ebbing and flowing throughout the day. You can be happy, sad and mad all in one day, in addition to other nuances of the emotional spectrum.

They tell me, “We can go through all of these stages in one day, but that doesn’t mean we are any one of them. Those are just our symptoms.” You have to learn to observe a person. Do not categorize them based on a bad moment. You have to really look at the big picture.

Margaret:

This is a really good overview of the spectrum of emotions that you go through. Is there a point, maybe between stages four and five, where you lose your self-awareness? Maybe you are aware of the forgetfulness or your short-term memory loss? Then, is there a point when you don’t even know anymore?

Lori:

That can happen, though where it happens is different for everybody. One of the things that people with dementia tell me all the time is they get really frustrated with the rest of us who try to deny the symptoms. They really want us to accept the symptoms.

If they’re saying they are having trouble, they don’t want you to argue with them and tell them they are normal. They want us to be accepting, they want us to be patient and kind and help them get assistance. We could go with them for a diagnosis, or talk with the doctor; maybe even help monitor and track information for the doctors.

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A lot of times we go in to see a physician, and we all assume that physicians know about dementia. Not all of them do, so it’s good that there are many ways to assess the condition. The seven stages are somewhat helpful, but they are not a unified system.

The truth is that we lack communication, and there isn’t a very good system out there. So it’s important to be able to track what you are seeing at what times of day. Sometimes you can have a variety of symptoms that need to be analyzed. Those may include not sleeping, a medication conflict, dehydration, vitamin deficiency or a thyroid issue. Typically, the doctors want to rule all that stuff out first.

Margaret:

From a caregiver’s perspective, what is the best way to positively address each of those stages? Based on your words, it seems like it’s really important to be open, understanding and patient. People should not try to categorize too much, like saying, “Oh, you’re having that symptom, you must be in stage three.”

It’s important to see the person as a whole, and go through this range of emotions with them. You’ve got so much great experience with those dementia chats that you do on the radio. You talk to people about their situations, which is really unusual. Where on the spectrum would you say are most of the people who join you for a chat?

Lori:

They are in the early to moderate stages. It’s a slippery slope though, because they’ll call some days and say, “I just can’t participate. I’m really feeling like I’m a six. I’m really confused. I’m unaware. I’m not up to it. I can’t make my dots connect.” Then, the next moment, they are going to be talking like you and I.

Dementia is not like a broken bone. No one’s in a sling, no one’s hooked up to oxygen, they haven’t lost their hair. There aren’t all those physical signs. I think the best thing we can do while someone is going through these stages is to be compassionate. Think how we would like to be treated in the same situation.

Also, it’s important to give them extra time. We are so fast-paced, we’re used to filling in their blanks, and we don’t give them that extra three to seven seconds. Their mind has to grind a little bit more sometimes to find their words or their thought patterns.

It’s not that they’re not comprehending what’s happening all the time, they just can’t spit it out. It would be helpful to them if we can just shut up sometimes and give them some space in a polite fashion. Unfortunately, that’s really difficult for us to do.

Margaret:

It’s just not the way we converse anymore. It seems like when we listen to a conversation, while the other person’s talking, we are just planning our response rather than actually listening to what they say. What you’re saying is actually a piece of good advice to communicating in general.

I remember you said in a past interview that the way you looked at your relationship with your mother was not as a caregiver but as a care partner. With these stages it seems like you are saying we should be a partner on the journey; to be willing to let them go back and forth on those stages as they need to.

Lori:

Exactly. The words that we use are critical when forming those new relationships. Care-partner or care-companion are more appropriate terms as opposed to caregiver. A caregiver says, “Hey I’m here to give you everything, and I’m not getting anything back. It’s all about taking care of you.”

When we say care-companion or care-partner we place the relationship back in the picture. That’s critical because our words are our expectations. If I revert myself to saying I’m a caregiver, that means you’re depleting me. I’m allowing you to do that because I’m in this role, which is not filling me back up.

It’s a team effort when we’re partners, and it makes all the difference. For me personally, I found it allowed me to do my task differently. When you take on the responsibility of giving care to somebody, you do it wholeheartedly. You want to do the best possible job, and sometimes we get a little fanatical without realizing it.

We kind of become control freaks because we want things to be done perfectly. We can actually shut out others who want to help, because they’re like, “I’m not getting in that spider web.” My brothers used to tell me, and I didn’t know this until after my dad died, that I was a control freak, when I just thought I was organized. So, in terms of how we care, those perceptions push people away, too.

Margaret:

I think that along the spectrum of seven stages everyone is feeling a bit out of control: the patient whose life is being taken over by this illness; the care partner who must maintain a productive relationship. So, having order, anticipating the question and filling in the gaps kind of holds you together.

Lori:

It also involves us emotionally. What I found is, when I looked at myself as a caregiver, I would sometimes get sad or frustrated—or even angry—because there were other things I wanted to do. I still wanted to do my best taking care of the person, but it was like I was missing out on something.

I was unconsciously having a pity party in my head and my heart. That trumps me being able to truly care for another person and be person centered, when I’m having those types of feelings.

The other thing to keep in mind is that it’s good being organized, but you shouldn’t go overboard with it. When you interact with friends and family you don’t go around acting like a sergeant, expecting everyone to follow your orders.

Margaret:

Some people probably do.

Lori:

Most don’t. We don’t have agendas, and we don’t typically control our conversations with our friends. It’s healthy to be more spontaneous and laugh more. Laughter is so important, and we often give that up to the disease.

People with dementia say they want that core relationship. Sure, they want to be well cared for, but they also want to be able to care for us in return. Sometimes we don’t allow that because we are onto the next task, instead of just sitting down and having a conversation.

Margaret:

Lori, this has been such a great conversation. I think you’ve done an amazing job introducing us to the stages of Alzheimer’s. This seems like the perfect time to pause and reflect on what you said and absorb all the information. I really appreciate you taking the time to be with us and share your experience and knowledge. Thank you.

Do you have personal experience with dementia or Alzheimer’s? Do you think the stages are clear cut or more like guidelines for physicians and researchers? Please join the conversation!

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