A Timeline of Dementia: What to Know for Each Stage

dementia stages timelineThough every type of dementia is different and every person who has dementia is different, understanding the basic stages can make a tremendous difference in the life of the senior, says Kim Warchol, president of Dementia Care Specialists, a specialized offering of the Crisis Prevention Institute. “Alzheimer’s disease and the related dementias tend to progress through predictable stages,” she explains. “When you know the characteristics of each stage and the abilities that remain, you can capitalize on those.”

That’s where Warchol chooses to focus in her work – finding the highest level of independence at each stage of dementia, rather than concentrating on what’s been lost.

Here, the occupational therapist and memory care consultant walks us through the five stages of dementia, and what to expect for each stage.

1. High-Early Stage of Dementia

This early stage of dementia is characterized by challenges with instrumental activities of daily living (IADLs), which include driving, managing medications, managing finances, and cooking. The reason for this, explains Warchol, is cellular death in the area of the brain responsible for executive cognitive function, which is the area that is the last to develop and the first to decline.

At this stage, she says, seniors need “distance supervision.”For example, if seniors are home alone, someone should check in every day to help them solve problems or adjust to any changes in routine. Doctors and other health care professionals can help the family start the conversation about dementia so the task doesn’t fall solely on the shoulders of the adult child, she adds.

2. Low-Early Stage of Dementia

A hallmark of the progression of dementia is that basic ADLs, such as dressing and showering, are now impacted. At this stage, says Warchol, seniors need 24-hour supervision because their judgment and safety awareness are compromised, so they are prone to accident and injury and are susceptible to predatory behavior.

However, she emphasizes that some critical abilities remain. Seniors at this stage of dementia are still goal-directed, so if the activity is familiar and routine, they can sequence themselves through it to the end. For example, says Warchol, if the care partner were to set out a man’s shaving supplies at the appropriate time of day, he would be able to complete the steps on his own. The key is to tap into seniors’ long-term memory to increase their opportunities for success and limit their feelings of anxiety and stress.

3. Middle/Moderate Stage of Dementia

At the middle stage of dementia, says Warchol, seniors have lost goal-directedness and can no longer sequence themselves through multiple steps. They now need one-to-one assistance for everything.

However, she emphasizes that seniors at this stage can still participate in activities that have been simplified to “just-right” challenges. For example, a care partner can learn from family members what kind of razor, shaving cream, and aftershave a man once used, and then have him smell the aftershave lotion first so it processes through the limbic system of the brain, helping him retrieve the steps to shaving himself.

“The person can be participatory in any meaningful activity,” says Warchol. “You just have to simplify it and adjust it to his level.”

4. Late Stage of Dementia

At the late stage of dementia, walking, speech, and fine motor coordination are becoming noticeably compromised, says Warchol. She adds that these are purely functional changes related to cognition, and if a person has additional health issues, he or she will likely have greater functional loss. Seniors at this stage need a one-to-one care experience, but they are still able to communicate through behavior and facial expressions, and they can participate in their care. For example, they can’t button their shirt, but they can push their arm through the sleeve.

At this stage, two ADLs Warchol promotes are self-feeding and toileting. “If we can simplify meals to finger foods and decrease distractions, they can feed themselves,” she says. In addition, though seniors at this stage are typically using adult diapers, they might still have some awareness of voiding if a care partner helps them sit on the toilet from time to time.

5. End Stage of Dementia

At the final stage of dementia, the brain has significantly atrophied, and seniors are mute and bed-bound. But, says Warchol, they still have their five senses intact and can respond and engage with anyone who stimulates them. “We can help them feel loved, safe, warm, and engaged, or they can feel hopeless, frightened, and in pain if we don’t treat them like human beings,” she says.

Because even at this end stage, seniors are still capable of tracking with you as long as you bring activities down to the sensory level.

“Abilities remain at every stage,” says Warchol. “Learning the characteristics of each stage can help the senior stay meaningfully engaged.”

Learn more: Dementia and Alzheimer’s

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17 comments on “A Timeline of Dementia: What to Know for Each Stage
  1. Carol Marak says:

    Thanks, Robyn, for the useful timeline on dementia. The perspective “finding the highest level of independence at each stage of dementia, rather than concentrating on what’s been lost,” is classic and a good reminder.

  2. Nancy Baer says:

    My husband is only 73 and is in late stage 4. He is the youngest patient in his unit…and still mobile. He has lost all interests…except loves to fold clothing/linens for the staff. He was in management in his career and still maintains some of his social skills like talking to everyone (staff included) who enters the facility (even tho he is unclear in his ability to speak now). I am lost as to how to help him do something he can enjoy and endure.Nothing grabs him accept sitting in the rocking chair on the porch where he lives (ehen I visit)….and going out to get ice cream. I feel guilty and inept at helping him. He just sits all day and does not join in any other activities..

    • Michelle Seitzer says:

      Hi Nancy,
      First I want to say thank you for sharing about your husband, and for your honesty about your feelings of guilt and helplessness. It’s something that many caregivers of loved ones with dementia feel (I certainly did when my beloved grandfather was in the final stages of Alzheimer’s), and by talking about it here, perhaps we can encourage others in similar shoes and learn from each other.

      It is wonderful that he is still mobile — though that can be heartbreaking because he is physically healthy yet still limited in what he can do — and that he has maintained those social skills and lifelong interests based on his career. I would say continue to nurture those things as much as you’re able. At some level, even if he can’t express it or you can’t see it, I imagine he finds some comfort in the routine/ritual of them, of the feeling of purpose it likely gives him.

      If he enjoys sitting in the rocking chair when you visit, let him do so, and enjoy the peace and simplicity of that activity with him (the same with going out to get ice cream). You can still have a meaningful visit with him, and feel less guilty about those being the only things he is interested in, if those activities bring him joy. Also, dementia takes away so much of a person’s control and independence, so if he’s independently choosing not to participate in other activities besides sitting in the rocking chair, that is a good thing because it is his choice. And if it seems to make him content, all the more reason to embrace it.

      Does he enjoy music? Reading? Looking at pictures? Those are simple yet enriching things you could incorporate with his rocking chair sessions, both when you are there and when you are not. If he was in management, maybe looking at a magazine or a book about leadership would be something enjoyable, or watching TED talks about management on a tablet or phone, if you have one. My grandfather loved the old hymns, so there were times that we just listened to music when I visited (he was bedridden at that point). Many times, he’d sing along, which was a beautiful thing to see because he really couldn’t speak clearly, but his singing was very clear! And he was so happy when he was singing.

      I hope these ideas will help you feel less guilty and more at peace with a situation that is far from easy. Take care of yourself, and take comfort in the fact that your husband can sense your presence and feel soothed by it even when he can’t say so with words.

      – Michelle

      You may also find some different activity ideas here: http://www.alz.org/living_with_alzheimers_101_activities.asp

  3. Jane says:

    My mom at 88 has late stage dementia and for the past 2 years sleeps 80% of the day. Some doctors are baffled others say they have seen it before.

    • Michelle Seitzer says:

      Hi Jane,
      Dementia is full of ups and downs, isn’t it? That’s strange that she sleeps so often but it sounds like you’ve talked to multiple doctors about it. I guess dementia affects each person so differently it’s hard to know what’s standard and what’s unusual. Do you have a good family doctor you can talk to about the changes your mother is experiencing in this late stage?
      – Michelle Seitzer

  4. Cathy Field says:

    my dad is 87 and has dementia and at home is was very mild and then 3 weeks ago he got UTI.. what a nasty beast that is at his age, well he spend 2 weeks in hospital and only 3 days in skilled nursing.. HE cant walk, feed himself and has diapers, he constantly yells for deceased siblings and has panic attacks of something in his early years of life that is haunting him. Now he is back in the hospital from his last panic attack that sent his bp sky high.. He is in constant yelling stage for his siblings , is this the end stage and do others people with dementia do this too? I have read alot and no one says anything about the person yelling and he talks like he is having a conversation with ever who he is yelling for. He does not know who we are and he doesn’t know who he is either. Any help would be so appreciated. Thanks.

    • Michelle Seitzer says:

      Hi Cathy,
      UTIs can really trigger major changes in a person’s mood, whether they have dementia or not. I’m so sorry to hear that you and your father have experienced this first-hand. My grandmother (who did not have dementia) once had a UTI that made her severely paranoid and exhibited dementia-like symptoms overnight. It was terrifying.
      As far as losing his ability to walk and use the bathroom, I’m wondering if there is something else going on besides the UTI causing those issues? The panic attacks, hallucinations and personality changes (yelling, etc.) may be consistent with the UTI but I’m not a medical professional so I couldn’t verify that. Have you talked to your father’s family doctor? That’s so tough when they are agitated and upset that way. I would definitely talk to your doctor about trying to determine if there is an underlying issue causing these extreme behaviors and symptoms. You might also want to do some research on the Alzheimer’s Association website, alz.org, or call their toll-free, 24-7 Helpline (1-800-272-3900) to find out what else you can do to ease his mind. Hope that helps!

  5. Dawn Vowles says:

    Hi, my dad is 66 and has early onset dementia due to a serious head injury 20 years ago. We have been told he is in the later stages which we all agree with, however, he still remembers who we all are, he is aware of where he is and what he is doing etc. He recently done a memory test to which he scored 2 out of 20, he was really confused with the questions and could not name a single animal when asked. It is heartbreaking to see him like this. He cannot walk or do anything for himself anymore. My question is, going by the later stage information, how is he able to remember us all but not remember something from a few minutes ago? I am dreading the day I walk in and he doesn’t know me, I think it will be terrifying for him if he thinks a stranger is coming into his room every time someone walks in. thank you xx

    • Michelle Seitzer says:

      Hi Dawn,
      First of all, I’m sorry for what you are experiencing with your Dad. It’s such a painful thing to watch a person you love going through such a struggle.

      Dementia is so complex. Though there may be some commonalities from case to case, it really affects each person differently based on their unique body chemistry, health history, education, personality, family, environment, and so much more. Unfortunately, because of this, pinpointing “why this and not that” at any stage of dementia is going to be incredibly difficult. Brain diseases and disorders are unpredictable, and the stages in this post, much like the stages of grief, really serve as a guideline and not a hard science in terms of what will happen when. Some people never lose the ability to walk even in the later stages, but they may lose the ability to talk. Some may never forget their family member’s names, even up to the end, some may forget them in the earliest stages of the disease. With dementia of any kind, affecting a person of any age and from any cause, there is no sure way to know what will and won’t be lost and when.

      This can be a discouraging answer but it can also be a hopeful one, depending on how you view it. Yes, he may be in the later stage, but he could be in that late stage for several years. Yes, he is confused by the simple questions being asked in the evaluation, which is hard to see, but his long term memory is still intact if he is able to remember you. Take hold of that for now and be encouraged by the fact that he still recognizes those he loves. Embrace that, and don’t worry about where he should be on a graph of stages or what animals he can or cannot recall. The most important thing is to love him as he is, for who he is, and trust that even when he loses his ability to remember you (which he may not ever lose, so don’t dread the day, just take it one day at a time!), it is the disease’s doing and beyond his control.

      You are right that it could be very terrifying for him to think a stranger is coming into his room, but you can’t really know what he’s thinking. So while he may not be able to recall and speak your name, he may still recognize you. And if he appears terrified, it could be because he knows you but is terrified that he can’t recall why. With dementia, it’s impossible to know exactly what the person with the disease is experiencing — we’re only seeing it from our perspective. Don’t stop visiting even if he doesn’t remember your name. Don’t stop loving your Dad. The connections and relationships, especially physical contact, like holding his hand or hugging him, will be reassuring even when the words are gone. Music is a powerful therapeutic tool for these later stages too. Find some of your Dad’s favorites and just enjoy listening to music together. That will probably be very soothing to him.

      I hope that helps!

      Here are some additional resources that may be of interest:
      Check out Naomi Feil’s validation therapy approach: https://www.youtube.com/watch?v=CrZXz10FcVM
      And this amazing clip from the excellent film, Music & Memory: https://www.youtube.com/watch?v=5FWn4JB2YLU
      Also, the Glenn Campbell documentary, I’ll Be Me, is a wonderful illustration of how a person with dementia can still be very active in the later stages (he was on tour for years while he still had dementia) and still have major struggles: http://glencampbellmovie.com

      You can also read our posts on Alzheimer’s and dementia for more ideas, information and inspiration on reaching your Dad at his level: https://www.ourparents.com/care-topics/category/alzheimers-dementia/

  6. Thanks for the explanation. As I learned about it, each person experiences with dementia can be different on one another, but each of them will have similar series of progress stages. It is more important to focus trying to life well with dementia.

    • Robyn Tellefsen says:

      Thanks for your feedback, Melissa. I agree — focusing on living well with dementia, whatever stage you’re in, is key.

  7. Carrie Thornton says:

    I have been doing some research on dementia and it does affected every person differently. My mom is 82 and she is in the late stages of dementia that is progressing accordingly to her doctor. She also has a heart problem. She required care 24/7 with her everyday living skills. My mom still is able to walk and feed herself. This disease is such a mystery and hard to understand. My mom does talk with my decease grandmother and sometimes think I am her mother or decease sister. She also get confused who my sibling and her grandchildren are. But the interesting thing that is very confusing to me is that she don’t sleep. She probably on a good night will sleep for about 3 hours. She be so tried. I have spoken to her doctors at length about is there anything we can do to get her to rest. I am so confused and scare and have no answer what I can do to help her. It’s breaking my heart to see my mom fight this disease and not winning. Any suggestions will be greatly appreciated.

    • Michelle Seitzer says:

      Carrie, all of these symptoms of dementia are so difficult to witness and experience. It’s a disease that causes family members and friends to grieve while the loved one is still living, and that makes caring for the individual that much more emotionally draining. Sometimes dementia causes people to sleep too much, others, not enough. I know some people have tried melatonin for children with special needs who have brain disorders/injuries that make restful sleep difficult to achieve. Perhaps it’s something to look into. You might also want to do some research on the Alzheimer’s Association website, alz.org, or call their toll-free, 24-7 Helpline (1-800-272-3900) to find out what other things may help her sleep. They may be able to recommend support groups for you so that you can talk to others and not feel so confused or scared, and to be sure you are taking advantage of any care resources or support that may help you sort through your emotions around this frightening, heartbreaking disease.
      My grandfather died of dementia in 2009 and the years/months leading up to it, and afterwards, were so painful. I understand what you’re going through. Reach out to get answers and support, Carrie — you don’t have to go through this alone!
      – Michelle Seitzer

  8. Mary Trevino says:

    My husband was diagnosed with frontal lobe dementia about 2 years ago. It started off with having trouble with names, but now it is progressing much faster. He can’t count money or tell time. He has a hard time searching for the words he wants to use. Today he has started having anger issues. He can still walk but more slowly than before. It breaks my heart to see him going downhill so fast.

    • Josh Culpepper says:

      Hello Mary,

      I’m sorry to hear that you are struggling with this issue. If you think that you need assistance with care, please contact a Senior Living Advisor at (866) 873-0030 or fill out an info request here.

      Thank you for your comment.

  9. Informative article sharing.

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  3. […] A Timeline of Dementia: What to Know for Each Stage – Seniors at this stage of dementia are still goal-directed, so if the activity is familiar and routine, they can sequence themselves through it to the end. For example, says Warchol, if the care partner were to set out a man’s shaving supplies … […]

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  5. […] A Timeline of Dementia: What to Know for Each Stage – At the middle stage of dementia … “You just have to simplify it and adjust it to his level.” At the late stage of dementia, walking, speech, and fine motor coordination are becoming noticeably compromised, says Warchol. She adds that these … […]

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  7. […] A Timeline of Dementia: What to Know for Each Stage – Here, the occupational therapist and memory care consultant walks us through the five stages of dementia, and what to expect for each stage. This early stage of dementia is characterized by challenges with instrumental activities of daily … […]

  8. […] A Timeline of Dementia: What to Know for Each Stage – This early stage of dementia is characterized by challenges with instrumental activities of daily living (IADLs), which include driving, managing medications, managing finances, and cooking. The reason for this, explains Warchol, is cellular death … […]

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