Living with Mild Cognitive Impairment (MCI)
HABIT Healthy Action to Benefit Independence & Thinking™
Welcome to the HABIT page for people living with Mild Cognitive Impairment (MCI) and program participants. The HABIT Program is for individuals with MCI and their loved ones to learn the best strategies for adapting, coping, and living their best lives with MCI.
Follow the HABIT page to receive updates and information about adjusting to MCI and combating dementia. Our goal is to connect you with others and provide you with information and support.
What’s the Difference Between Mild Cognitive Impairment (MCI) and Dementia?
As a neuropsychologist, I often see patients who are concerned about the possibility that they have Alzheimer's disease. When we discuss their test results and diagnosis, I often get questions such as “what's the difference between Alzheimer's disease and dementia?” Or “what's the difference between mild cognitive impairment and dementia?”
Both mild cognitive impairment (MCI) and dementia are umbrella terms, meaning that they are broad or general ways of defining a condition that can have many different, specific causes.
How are they similar?
Both MCI and dementia involve having cognitive skills that are not normal for age. For many people, this is memory impairment. But, other people have difficulty with language functioning, thinking speed, visuospatial skills, problem-solving, or attention. Both MCI and dementia are diagnosed through a series of medical and cognitive evaluations, typically including: bloodwork, brain imaging (such as CT or MRI), neuropsychological evaluation, and a careful history-taking to rule out other causes of thinking difficulty by a physician, psychologist, or both.
Both MCI and dementia can be caused by the following:
- Alzheimer’s disease
- Cerebrovascular disease (including stroke)
- Parkinson’s disease
- Lewy Body disease
- Frontotemporal degeneration
How are they different?
The main difference between MCI and dementia comes down to how folks are functioning in day-to-day tasks. People with MCI are still pretty independent with their daily functioning. They usually are still driving, cooking, paying bills, and taking care of the house. Some are even still working. They may use systems, strategies, or other aides (like a pill organizer) to keep themselves independent.
People with dementia, on the other hand, have cognitive difficulties that have progressed to the point that they interfere with the person being able to be independent in her daily life. Therefore, they may have family members or healthcare assistance who administer their medications to them, do the cooking, and/or provide transportation. A person with dementia typically would not be able to hold down a job.
In addition, people with MCI may have only one area of thinking difficulty (often memory), with normal thinking abilities in other domains. People with dementia usually have global cognitive impairment or problems in multiple cognitive domains.
Chime in - how could healthcare professionals do a better job of explaining the difference between MCI and dementia when providing the initial diagnosis?
Ethan McConkey, Moderator
@ethanmcconkey
@ethanmcconkey
Posts: 710
Joined: Jul 31, 2018
@dorisena Yes, I am willing to share my experiences and how I managed to live through the problem. I wrote a reply but it was too long for the space so I lost it. The HIPPA law allows a patient to refuse treatment and drive his family nuts if he chooses. A compulsive spouse will come after you even if you try to use the court, and most judges are not qualified to make a judgment about mental disease. Feel free to private message me. I can be supportive, at least. My husband wanted to take me to the Grand Canyon to see the beautiful view, and I had already been there and knew I would never come back except perhaps in a box so I used my bad back as an excuse not to accept his generous offer. He died of a tumor on the spine 12 years ago. He had diabetes, obesity, alcoholism, drug addiction due to pain, and was abusive, selfish and did not provide financially well enough for me to make ends meet. He was a con artist businessman and the church was full at the funeral. Dorisena
Hi @dorisena you may have noticed I removed your email from your comment. We recommend not sharing personal contact information in a public online forum. We don't want you to get unwanted spam as a result. Instead we recommend using the private message functionality. However, I would like to point out that by sharing on the forum, as you are right now, your messages benefit many and we can all learn from each other.
Liked by Lisa Lucier, Connect Moderator
providence1960
@providence1960
@providence1960
Posts: 25
Joined: Aug 30, 2018
@carollc I truly appreciate this information. The more information we have about the progress of MCI the better we can handle caring for our loved one. It is truly an insidious disease. It robs the person of their dignity and purpose in life. It breaks my heart to watch my husband realize he can’t do things that use to be so simple for him to do. Thank you for any and all information you can share with us! Carol
It is heart crushing.
Liked by Debbra, Volunteer Mentor
dorisena
@dorisena
@dorisena
Posts: 232
Joined: Mar 04, 2019
@ethanmcconkey Hi @dorisena you may have noticed I removed your email from your comment. We recommend not sharing personal contact information in a public online forum. We don't want you to get unwanted spam as a result. Instead we recommend using the private message functionality. However, I would like to point out that by sharing on the forum, as you are right now, your messages benefit many and we can all learn from each other.
Thank you for removing my address because of policy. I thought if it was not good, someone would tell me. I have so much I can share that is helpful because of my years of stressful experiences and because of my research study and seeking advice. We help each other and I really appreciate having the opportunity to serve others. Dorisena
Liked by Colleen Young, Connect Director, Dr. Anne Shandera-Ochsner, HABIT MN Director, Debbra, Volunteer Mentor
Debbra, Volunteer Mentor
@debbraw
@debbraw
Posts: 1042
Joined: Dec 04, 2017
@lbrockmeier I was Diagnosed with MCI a year ago. Tests have shown no digression in the past year, even some improvement. I was Only told I had It. Nothing else. Not anything about progression, what to look for in myself as far as changes to be aware of. My research says some people stay the same for a long time. I do Have memory issues, but I am Fully functioning on my own. Where can I get More specific information about MCI and where can I get Answers to my questions? I fired My neurologist since he has been no help at all. I really Need some real answers.
Hi @lbrockmeier – Welcome to Connect! Glad you are here to learn more about MCI. I know that diagnosis must be terribly scary, but it sounds as if you are doing great – and even having some improvement. My husband was diagnosed with MCI a few years ago and he hasn't been as fortunate as you in maintaining his memory and functioning. When he was diagnosed, we attended a 2-week Mayo Clinic program called Healthy Action to Benefit Independence and Thinking (HABIT). It was a lifesaver for us. Here are a couple of links you might want to check out:
https://www.mayoclinic.org/diseases-conditions/mild-cognitive-impairment/symptoms-causes/syc-20354578
https://www.mayo.edu/pmts/mc2800-mc2899/mc2815-10.pdf
You'll see that the 2nd link – the flyer – has phone numbers if you want to contact any of the Mayo locations.
And here is a video about the HABIT program that might be helpful:
Do you have a new neurologist after firing the first one? If so, I would expect that you would have been asked to do a followup exam this year or next. Initially, with my husband, they did a complete neuro-psychological exam that took around 5 hours to make the diagnosis. They asked him to come back for a similar followup exam the next year. If you haven't got a new neurologist, I would suggest finding one you like and then asking the questions that are concerning you – including what kind of followup evaluations they want to do to monitor progression. I also had good luck with getting lots of helpful information from our local Council on Aging (COA). Could you make an appointment at your local COA?
Liked by Colleen Young, Connect Director, Lisa Lucier, Connect Moderator, Dr. Anne Shandera-Ochsner, HABIT MN Director, liv4now
Dr. Anne Shandera-Ochsner, HABIT MN Director
@dranneshanderaochsner
@dranneshanderaochsner
Posts: 29
Joined: Aug 24, 2017
@debbraw Hi @lbrockmeier – Welcome to Connect! Glad you are here to learn more about MCI. I know that diagnosis must be terribly scary, but it sounds as if you are doing great – and even having some improvement. My husband was diagnosed with MCI a few years ago and he hasn't been as fortunate as you in maintaining his memory and functioning. When he was diagnosed, we attended a 2-week Mayo Clinic program called Healthy Action to Benefit Independence and Thinking (HABIT). It was a lifesaver for us. Here are a couple of links you might want to check out:
https://www.mayoclinic.org/diseases-conditions/mild-cognitive-impairment/symptoms-causes/syc-20354578
https://www.mayo.edu/pmts/mc2800-mc2899/mc2815-10.pdf
You'll see that the 2nd link – the flyer – has phone numbers if you want to contact any of the Mayo locations.
And here is a video about the HABIT program that might be helpful:
Do you have a new neurologist after firing the first one? If so, I would expect that you would have been asked to do a followup exam this year or next. Initially, with my husband, they did a complete neuro-psychological exam that took around 5 hours to make the diagnosis. They asked him to come back for a similar followup exam the next year. If you haven't got a new neurologist, I would suggest finding one you like and then asking the questions that are concerning you – including what kind of followup evaluations they want to do to monitor progression. I also had good luck with getting lots of helpful information from our local Council on Aging (COA). Could you make an appointment at your local COA?
@lbrockmeier @debbraw beat me to it – she gives a lot of good suggestions, including finding a neurologist who you feel confident in. Geriatric Medicine providers can be a wonderful resource, as well.
Liked by Debbra, Volunteer Mentor
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 7532
Joined: Jul 23, 2014
@janeejane Dorisena, This is exactly what I needed to see… your response. I moved to our second bedroom last night with the door locked! My husband and I had a nice outing then came home to be shouted at about who knows what. His mood changes on a dime. I found out he bought a gun… his first although he did have one my father had given him. We took it when he was first diagnosed and didn’t miss it. My son who is in law enforcement tried to reason with him to get it away, but he fefused. We changed the lock on the case. My husband said he wanted to go target shooting since he can no longer fly a plane or play golf. Friends have disappeared. His Mayo neurologist did not make a big deal of the gun—- he compared it to a fishing pole. My husband was a high ranking officer in the military so I guess his Mayo doc thought he was used to guns… not!! My husband carried a gun on a three month mission otherwise had to go to the firing range once a year to qualify. Never hunted, never went target shooting.
I am frightened of my husband’s frequent mood changes. I am tired of living afraid. He has only been verbally abusive, not physical yet. Our physician told me to take him to the VA yesterday telling my husband it was for back pain he is constantly complaining of… had surgery on back in December. I was then to tell the VA doc I feared for his safety and mine. He would not go. I don’t know what to do. Divorce because an anoxic brain injury broke an otherwise good man and father? I am at a loss.
I too have to stay on top of cleaning out the fridge. Caught him eating old sliced turkey but why should I care? Won’t let me pay the bills or do them together. I get blamed for everything that goes wrong. My nerves are shot!
Forgive typos. I have eye problems.
Hi @janeejane, I'm glad that you found this article useful and have connected with members like @dorisena, who has personal experience to share with you.
Having to navigate frequent mood changes and never knowing what to expect are exhausting. No wonder your nerves are frayed. I know that many on Connect have had to manage such conditions, and that you have been getting some ideas from other members here and in the Caregivers group https://connect.mayoclinic.org/group/caregivers/ where this is a common topic of discussion.
However, abuse is never okay, even if the disease may be (part of) the underlying cause. You must keep yourself safe. And I see that you are taking steps to do that. You may also wish to visit the National Domestic Violence Hotline website http://www.thehotline.org/ On this website you will find tips and resources, as well as a phone number to call 1-800-799-7233 or you can use the online chat and get help without saying a word. By calling the Hotline, you can work with professionals to find a safety solution that is right for you.
A gun is something to take seriously. Am I correct in understanding that your husband no longer has access to the gun because the case lock has been changed? Do you keep the ammunition locked up separately?
Do you get respite from caregiving?
COMMENT
Dr. Anne Shandera-Ochsner, HABIT MN Director
@dranneshanderaochsner
@dranneshanderaochsner
Posts: 29
Joined: Aug 24, 2017
@parus I found this article interesting as well as informative. So far a doctor has not mentioned any of these things. How often do I ever speak at an appointment?? We do not easily notice these small changes in ourselves. No one else does either unless it is something major. I live alone and rarely see any one else. I know my speak dyslexic at times and cannot find words or think a word and something else comes out totally unrelated. Mostly I say nothing. I go to the doctor and stare at their back or a lid of a laptop. It seems the norm now. 🙁
@parus It can be tough to ask questions at an appointment, especially with a computer seeming to take up the provider's attention, but it's so important to be an advocate for yourself and speak up! It may be helpful to write down your questions in advance and mention early in the appointment that you brought a list of questions. If you are noticing cognitive changes that concern you, let your provider know, and ask if a neuropsychological evaluation (or updated evaluation, if you have not had one in a year) would be indicated.
Liked by Lisa Lucier, Connect Moderator
Dr. Anne Shandera-Ochsner, HABIT MN Director
@dranneshanderaochsner
@dranneshanderaochsner
Posts: 29
Joined: Aug 24, 2017
@colleenyoung Hi @janeejane, I'm glad that you found this article useful and have connected with members like @dorisena, who has personal experience to share with you.
Having to navigate frequent mood changes and never knowing what to expect are exhausting. No wonder your nerves are frayed. I know that many on Connect have had to manage such conditions, and that you have been getting some ideas from other members here and in the Caregivers group https://connect.mayoclinic.org/group/caregivers/ where this is a common topic of discussion.
However, abuse is never okay, even if the disease may be (part of) the underlying cause. You must keep yourself safe. And I see that you are taking steps to do that. You may also wish to visit the National Domestic Violence Hotline website http://www.thehotline.org/ On this website you will find tips and resources, as well as a phone number to call 1-800-799-7233 or you can use the online chat and get help without saying a word. By calling the Hotline, you can work with professionals to find a safety solution that is right for you.
A gun is something to take seriously. Am I correct in understanding that your husband no longer has access to the gun because the case lock has been changed? Do you keep the ammunition locked up separately?
Do you get respite from caregiving?
Great resources, @colleenyoung – I would add that in general, if you feel your safety is compromised, physically leave the situation immediately and call 911.
COMMENT
Dr. Anne Shandera-Ochsner, HABIT MN Director
@dranneshanderaochsner
@dranneshanderaochsner
Posts: 29
Joined: Aug 24, 2017
@dorisena Thank you for removing my address because of policy. I thought if it was not good, someone would tell me. I have so much I can share that is helpful because of my years of stressful experiences and because of my research study and seeking advice. We help each other and I really appreciate having the opportunity to serve others. Dorisena
@dorisena – thank you for your comments and willingness to share your experiences with others in the group.
dorisena
@dorisena
@dorisena
Posts: 232
Joined: Mar 04, 2019
There could be problems with calling 911 if you feel you are in danger. Defenders of the potentially violent person can rally around that person and decide you are the person with the mental problem and the whole thing boomerangs on you. The main reason I did not share my husband's abuse with others or the professionals is because it could make me look like the bad person instead of the person throwing the tantrum. My husband would lie and tell others how badly I treated him and they believed his stories. He told our sons I refused to fix lunch for him on weekends and the truth was I had supplies to feed him that had to be discarded after he never bothered to come in the house to eat or wanted instant demand cooking when I was involved in other work. And he would never help himself to fix a meal. After he died, I lived in fear of someone charging me with causing his illness and death so I kept very quiet about everything. This delayed my eventual healing process and I suffered from nightmares for months until I gained enough strength in reality to understand that he could never hurt me mentally again. Potential victims need training on how to be safe, nonconfrontational, economically protected, and find reliable support people to get through the crises that arise. Eventually the victim needs to find another place and way of living that protects them because it never gets better with time. I did not leave the marriage for 50 years, however now I realize that I should have in later years after I had a safe place and a little savings. I would have sacrificed time with my grandchildren and I refused to do that. Freedom from mental abuse and control is not a bad goal.
Liked by Debbra, Volunteer Mentor
dorisena
@dorisena
@dorisena
Posts: 232
Joined: Mar 04, 2019
@dorisena There could be problems with calling 911 if you feel you are in danger. Defenders of the potentially violent person can rally around that person and decide you are the person with the mental problem and the whole thing boomerangs on you. The main reason I did not share my husband's abuse with others or the professionals is because it could make me look like the bad person instead of the person throwing the tantrum. My husband would lie and tell others how badly I treated him and they believed his stories. He told our sons I refused to fix lunch for him on weekends and the truth was I had supplies to feed him that had to be discarded after he never bothered to come in the house to eat or wanted instant demand cooking when I was involved in other work. And he would never help himself to fix a meal. After he died, I lived in fear of someone charging me with causing his illness and death so I kept very quiet about everything. This delayed my eventual healing process and I suffered from nightmares for months until I gained enough strength in reality to understand that he could never hurt me mentally again. Potential victims need training on how to be safe, nonconfrontational, economically protected, and find reliable support people to get through the crises that arise. Eventually the victim needs to find another place and way of living that protects them because it never gets better with time. I did not leave the marriage for 50 years, however now I realize that I should have in later years after I had a safe place and a little savings. I would have sacrificed time with my grandchildren and I refused to do that. Freedom from mental abuse and control is not a bad goal.
I remember when I was a teenager my mother brought my grandmother to live with us because she didn't want her in an institution. She was one crazy old woman, with moaning that frazzled all our nerves. After two weeks my father came home from work, took one look at the sad scene in our home, and said "there is a crazy person living in this house. If this keeps up, there will soon be two crazy women living in this house." He told my mother to take her mother back to where she could be cared for, and my mother complied. My grandmother and grandfather both lived institutionalized until their deaths, and they didn't know us or were not sane enough for us to visit. My cousin, a nurse, saw that my grandfather was bathed once a week, by force, usually. My point is that we need to learn enough to protect our own mental health while caring for those whose minds can destroy us as well. Dorisena
Lisa Lucier, Connect Moderator
@lisalucier
@lisalucier
Posts: 3104
Joined: May 10, 2017
@dorisena I remember when I was a teenager my mother brought my grandmother to live with us because she didn't want her in an institution. She was one crazy old woman, with moaning that frazzled all our nerves. After two weeks my father came home from work, took one look at the sad scene in our home, and said "there is a crazy person living in this house. If this keeps up, there will soon be two crazy women living in this house." He told my mother to take her mother back to where she could be cared for, and my mother complied. My grandmother and grandfather both lived institutionalized until their deaths, and they didn't know us or were not sane enough for us to visit. My cousin, a nurse, saw that my grandfather was bathed once a week, by force, usually. My point is that we need to learn enough to protect our own mental health while caring for those whose minds can destroy us as well. Dorisena
Hi, @dorisena – it sounds like you have many experiences and tips to offer those who are living with and/or providing care for those experiencing MCI and then dementia like you shared about with your husband, or the mental decline you witnessed in your grandmother. I'd like to invite you to please share with others in our Caregivers group in this discussion https://connect.mayoclinic.org/discussion/caregiving-for-dementia-sufferers. I'd suggest you might read through some of the past posts as well as post about what you've experienced to help others discussing there.
COMMENT
dorisena
@dorisena
@dorisena
Posts: 232
Joined: Mar 04, 2019
Two important things about mental health need to be stressed. First, a person is not fine one day and then has a static mental condition the next day. it is usually a gradual, inconsistent decline, unless there was an injury or something physical like a stroke. My husband was "unreasonable" throughout our marriage, and after some strange episodes, he would be fine the next day and I would blame the outburst on having a bad day. He could pretend to be cooperative and reasonable when it was necessary to do so for business reasons. I couldn't decide if there was a problem to pursue. After twenty years of marriage, he became distant and interested in other woman, in plain view of people in the village. He aggravated me and I decided he wanted me gone, but I was cool about all his strange behaviors because I knew he didn't intend to spend money on any women. Eventually that behavior passed.
The second point is that there is seldom just one mental problem to deal with. It is called comorbidity. I had to deal with alcoholism, OCD behavior, narcissism, diabetes, and overeating disorder at the same time, all the while pretending he was normal because he hid it so well and lied so convincingly.
Our family life became a nightmare until the adult children finally recognized the dementia behavior. But they thought I could handle him. I could not.
They did not recognize the danger I lived in. They thought I was not tough enough on him. There was no reasoning with him after that. He ran around the community in his truck and hung out at a place where he could devour donuts and take a nap. I didn't know where he was during the day. Dorisena
bonniep
@bonniep
@bonniep
Posts: 43
Joined: Oct 27, 2017
@lbrockmeier I was Diagnosed with MCI a year ago. Tests have shown no digression in the past year, even some improvement. I was Only told I had It. Nothing else. Not anything about progression, what to look for in myself as far as changes to be aware of. My research says some people stay the same for a long time. I do Have memory issues, but I am Fully functioning on my own. Where can I get More specific information about MCI and where can I get Answers to my questions? I fired My neurologist since he has been no help at all. I really Need some real answers.
Please contact the H.A.B.I.T. program at Mayo. It will be a life saver for you and a partner.
We now have active follow-up support group meeting that are so valuable.
@dorisena
In reply to @parus
You can be your own teacher and defender because you are still interested in being the best you can be. Everyone declines with age, and most people keep working their minds to keep it functioning effectively. Living alone is very difficult, as I have done it for 12 years now and most people don't realize that I need company and comfort for the sad, gloomy days or when I have pain. It takes effort for everyone to keep old bodies working smoothly. The body and mind work together and that is just common sense which you seem to possess. The only thing your doctor diagnosed is that you are slowing down in your thinking, and everyone does that eventually. Are you putting your socks in the refrigerator? If you aren't doing weird things, and you can still fix your meals or afford to eat out, you are as normal as the rest of us. Find someone to talk to who can cheer you on for a life worth living. We are on your team! Dorisena
Liked by Chris Trout, Volunteer Mentor, Dr. Anne Shandera-Ochsner, HABIT MN Director, Debbra, Volunteer Mentor, jodeej