Follow
Share

My sister has early onset dementia. She walks all day long. We watch her constantly as she sometimes wanders. She can only say "yep."


She is helpless and would walk naked if I did not dress her. She is incontinent but not full fecally yet.


She is under hospice care but home and still walking. What do they see I don't? I feel like she is not ready for that yet?


She can't eat or drink without prompting. She doesn't know us any more. She is only 65.


Everyone else I read about is old and not physically strong. Anyone else dealing with FTD???


Is this really the end??

Find Care & Housing
I can relate to what you are observing. My LO was diagnosed with Vascular Dementia at age 62, four years ago. (Now that she's in late stage, they suspect AD too, so Mixed.) Early on, she liked to walk, but, was hampered due to her poor balance and being prone to fall so much. After she went to the wheelchair, she seemed to wheel around using her feet to propel herself, sometimes hand use too, for hours. All day, she would scoot around in her wheelchair up and down the halls of the MC unit, into activity room, back to her room, etc. It looked exhausting. She has been on meds for anxiety since early on, but, it never seemed to affect that wheeling. She's worn out shoes doing it. I think it's kept her heart strong, but, her legs are very thin. She has gone on Hospice recently due to her progression, fever, infections, etc.

Have you discussed the prognosis of FTD with her doctors or the Hospice team?

I'd be interested to see how the medications work. I've been told that many of the medications that are meant to help with behavior, agitation, anxiety, etc. is prescribed off label. My LO has done well with them, but, they don't seem to have affected the wheeling or patting.
Helpful Answer (0)
Reply to Sunnygirl1
Report
Londll Sep 10, 2018
Five days into meds an so far I don't see a change! If we had their energy it would be awesome wouldn't it!! 🤪🤪
(0)
Report
My mother is almost 83 years old and has been walking for years but especially in the past three years. She has moderate+ dementia and believes she is catching the train, plane, "someone" is coming to pick her up for work, a meeting, an exhibition. She has walked so much in the past three years that she has worn her knees out....The walking is comparable to her trying to catch her memory, always trying but having a hard time finding the starting gate.
Helpful Answer (1)
Reply to cobutts
Report
Londll Sep 10, 2018
I wish we could know what is in their minds that caused this! It must be torture for them!! I don't think anyone who has not experienced can understand how hard it is on our loved ones!! 💕
(1)
Report
You are much better off with a walker than a sitter. Sitters will eventually require 100% care for everything they need to be done. They don’t move. You don’t want to drug a walker, you want a little something for her to calm down on rainy days. I was told there is a cream that is rubbed on their arms. It calms them. Ask the Dr. There must be some drug in that cream that’s being absorbed. Use it sparingly.
Helpful Answer (1)
Reply to Rosemary44
Report
Londll Sep 10, 2018
So far the meds are making no difference. She still takes 100% care because we have to keep her from wandering off. She can get away so fast!! You can never let your guard down! I know the time will come when she won't be able to walk. The dementia marched on leaving them all behind. 😢😢
(0)
Report
Londll,
I think the OCD was brought on by the Dementia/Alzheimers that my sister has. Unfortunately she was on illegal drugs most of her life and I think that may have caused the disease. They do have her of Aricept, a dementia drug to help keep her more normal instead of talking off the wall. I thank God that she is finally be taken care of by people who know what to do. I wish you the best of luck with your sister.
Helpful Answer (0)
Reply to Raingirl
Report
Londll Sep 10, 2018
http://www.addictionrecoverycenteroftemecula.com/browse-20741/Brain_Scan_Images.html

How sad!!! The same parts of the brain are affected with drugs or alcohol as this disease!!! More attention needs to be paid to this!!!
(1)
Report
LondII, how about her sleep overnight? It seems nobody ever mention that important part.
Helpful Answer (0)
Reply to jcares
Report
Londll Sep 8, 2018
She sleeps 14 hours a night. That's a lot huh?
(0)
Report
I agree with you Marsh Cal. I’m wondering if you noticed your brother burping before the trouble swallowing started. My husband has started doing it out loud in public after he eats. I discouraged it at first, but, like your brother, he couldn’t comprehend, and I also realized he may not be able to help it.
He too has FTD, an yes, it is very different from Alzheimer’s in addition to being a rare diagnosis overall. To answer the original question, my husband was diagnosed four years ago, when he was 64 (on the older end of FTD diagnoses we were told) and is still in good shape physically. About nine months ago he started pacing indoors from room to room, back and forth, and he’s extended that to going in and out to the front porch. He will also walk occasionally but not very far and has always come back. A friend bought him an ID bracelet that he refuses to wear; luckily we live in a small rural area and everybody knows he belongs to me. I am constantly grateful for the little things.
Helpful Answer (1)
Reply to Rafaela
Report
Londll Sep 7, 2018
Thank you for your help! We got her an ID bracelet from the sheriff's department. They lock it in so it cannot be removed. I also had tee shirt made with her name on the back. Now I wish I had put dementia patient under her name. Just sharing ideas. My sister was diagnosed in 2013. When we look back we see she had it many years! Who knew behavior was an indication of her journey. We made excuses for all odd behavior!! Change of life, depression etc. I imagine you can look back and see changes too.
(4)
Report
It is coming maybe just not for a good while yet. My father also walks a lot, he is more verbal than your sister but it usually makes little sense. I have noticed that he will walk a lot when his back hurts or he is constipated, it seems to hurt worse when he sits. I have gotten a prescription for pain relief from his doctor and if he even indicates that he hurts I will make him a hot chocolate with it dissolved in it. I also started making him a hot chocolate in the morning with miralax in it to prevent the constipation. Everything I have read about early onset dementia says that it progresses much faster than the elderly who get it, depending on their health
Helpful Answer (0)
Reply to Glendaj2
Report
Jasmina Sep 7, 2018
If he's not allergic to nuts, try some coconut in his coffee. A teaspoon. Don't put in cold drinks. Helps with constipation. Don't put in a smoothie either, it will become lumps. Or just cook your meal/veggies using it. Good luck.
(0)
Report
See 1 more reply
My mil is 88 and also a walker. She puts on her shoes at night and walks around her room right next to ours.
If she is not doing something right now, it hasn't happened. We spent 7 hours making salsa and an hour later she stated the day was boring...I was sitting watching TV because I was tired!
She doesn't nap and unfortunately all the things she had liked to do she can't any longer-puzzles, reading, word games, watching news. It's all to confusing now and she still wants to do something so it all tests on me to come up with something. I use trivia books from Eldersong that help sometimes. We try to have at least one activity a day but it's not enough for her.
WhenI I pick her up at adult daycare, she always tell me it is boring there too. I'm pretty sure she won't be happy anywhere.
Helpful Answer (1)
Reply to MARRAM
Report
Londll Sep 7, 2018
I am so sorry!! I am there doing that but my sister can no longer speak. Just keep a smile on and do NOT worry about her boredom!! Life is not a game show and is not exciting everyday! As we know. Try not to be responsible for her entertainment. Maybe you should just respond to her by saying " I'm sorry you were bored."

I'm not an expert but I hope you get some ideas from all the caring people on this site!! 😘😘
(1)
Report
See 1 more reply
I agree with Susan needs help (love that name). My mom was a HUGE walker. Couldn't sit for more than 5 or 10 min. Would walk a mile to the grocery store and back (wouldn't go in, yes I would follow her in the car after she started getting worse). When she went to the facility because she couldn't be handled anymore at home, she continued pacing. All hours. get in bed for a while, get up and start pacing again. They also said let her do it. She fell several times fortunately no breaks until the last time. When she first went her roommate was 58. Had been there a year. Her husband and kids noticed something was wrong 5 years earlier. There are different Stages and it sounds like your sister is unfortunately in the latter stages. I'm so sorry. The good news.....she isn't aware of it. The bad news.....we have to watch a family member go through this. Good Luck and may God Bless.
Helpful Answer (3)
Reply to pargirl
Report
Londll Sep 7, 2018
We asked about the aniety meds and now we are trying Olanzapine for her. We are concerned because it says not for dementia patients. Neurologist says it's okay for her but we are only on second day. I will let you know if it works. Sooooo glad to know this behavior is common to FTD!! Thank you for sharing!!
(1)
Report
My mother also has dementia, age 93. She walks all day long especially on the days it is at it’s worse. She cannot sit longer than 5 min. We have a long hall, she is up and down it all day and in and out of the back door to patio comes back in after sitting for minutes.
Helpful Answer (1)
Reply to Bamagirl22
Report
Londll Sep 7, 2018
Yes all of our doors get opened and closed hundreds of times a day! It can be difficult to put up with some days!!! We have dog parks here and I wish they had a fenced area where I could take her to walk safely. Isn't this sooooo OCD like???
(2)
Report
From spending time in memory care units, there are a few types of people with dementia. Walkers and sitters, and those who want to be walkers but fall when they try to get up. I feel bad for those who really want to get up but can’t.

Those who compulsively walk should be allowed to do so. It’s very healthy for them to get that exercise. My husband can’t get up but enjoys going all over the place in his wheel chair. I encourage that so he gets some exercise. I stand him up at sinks to wash his hands, so he can get to stand and also to hold on to something solid because over he’ll go.

They just have to move, once falling begins, so does the nightmare begin trying to keep them in place. Some never get to that place, they stay able to walk with balance.
Helpful Answer (3)
Reply to Rosemary44
Report
Londll Sep 7, 2018
All the way to death?? Or does it stop sooner??
(1)
Report
yes, now I understand that this walking type of changing behavior is a sign of dementia, thats what my mom start doing three years ago, walking and walking, sometimes in the road with cars (two times policeman was bringing her back to the house) and yes, rainy days were a catastrophe because she was in much more anxiety, now she is walking in the rehab facility with the same stubbornness. In a hospital when she cant walk physically she does not understand that mentally and they had a hard time to stop her from walking...its so hard to see...
Helpful Answer (3)
Reply to poetry21
Report
Londll Sep 7, 2018
It is!! We talked to Hospice an are trying a new medication for her. See above. I will post after a week to let you know if it helps. I can't believe so many people are out there with me!!! Thank you so much for sharing!!
(1)
Report
My 92 year old dad used to just sit in his house. Since his dementia was diagnosed earlier this year, he has begun to take a lot of walks up and down the block, all day long. Don't know if it was the dementia or the fact he has begun using a walker. Maybe he is more confident. I have noticed the strength in his legs coming back so maybe it is a positive for him.
Helpful Answer (0)
Reply to Babs75
Report
Londll Sep 7, 2018
It keeps them super fit!! My sister now has normal cholesterol, which was high!! And she is no longer pre diabetic! The body is in amazing health but their is no brain left except for the most basic of functions!! Thanks for sharing!!
(0)
Report
From what I've read here @AgingCare, the walking is "normal."

But if your sister cannot dress herself and can't eat or drink without prompting - it sounds more advanced than 'early onset' to me.

You need to be talking with her primary physician to ask about early onset vs full-blown dementia and what you can do about it. Also ask why she is on HomeHospice. Her primary physician and even the HomeHospice can give you more answers than we can.
Helpful Answer (0)
Reply to RayLinStephens
Report
SusanNeedsHelp Sep 6, 2018
The term early onset means she got it at an early age. It doesn't mean its a early stage.
(7)
Report
See 1 more reply
projectlifesaver.org
Helpful Answer (0)
Reply to cgalowitch
Report
Londll Sep 7, 2018
Got a number to call but they are not available until Monday. Sounds great!! I will follow up with you on the results when I get them!! It pays to post everyone is so helpful!! Thank you!!
(0)
Report
Is she walking or wandering? My father walks around allot. I would review her medications immediately. Here's an interesting article from the Washington Post that may help once you find out her medication.

washingtonpost.com/outlook/2018/08/10/8baff64a-9a63-11e8-8d5e-c6c594024954_story.html?utm_term=.7249d450fc58
Helpful Answer (0)
Reply to donkeehote
Report
Londll Sep 7, 2018
She is not on any meds. But now because of advise here we are going to try one. See above! Thanks for the article!!
(0)
Report
My sister also was diagnosed with Alzheimer's/Dementia and was living alone. We had to have her hospitalized and put in a nursing home. She lost her job of almost 20 yrs and wouldn't tell us why. We believe it had something to do with the symptoms. Not sure,. But since that, she has gone down hill. She was always a loner, so we tried not to bother her too much. But my brother who lived next door noticed she would go to the trash can outside about 20 times a day and look in it. Also, the same with the mailbox. She would never let anyone in her house. We found out she was defecating in the kitchen sink and anywhere she could. She wasn't using the bathroom. She house was in shambles, where she use to be a very clean person. She somehow let her car burn up and the fire department came. It was a real mess. We had to move everything out of her apartment and get rid of it. She is only 61 years old. But we do have some relief that she is safe now and taken care of. She also lost a whole lot of weight from not eating. So now we go and visit (which is close by) as often as possible. She doesn't seem to realize where she is, she just likes it and seems happy.
Helpful Answer (3)
Reply to Raingirl
Report
Londll Sep 7, 2018
Yes!!! If my sister did not have us it would be the same! Sad she doesn't even know us!! Thank you for sharing!! Do you think OCD is the result of the disease or part of the cause??
(0)
Report
My dad was in his early 60s when diagnosed with Alzheimer's. (We think he started showing signs at 58.) He was a compulsive walker for quite awhile. He walked the "circle" in my parent's house for hours daily. It drove my mom crazy for awhile, but after thinking about it, we decided that was much better than drugged and sleeping all day. She had her carpet replaced with wood flooring. We removed any rugs and trip hazards. We put ID related items on his tennis shoes in case he walked outside. We moved a TV so he could see it along his path and some days we turned on the country music he loved. And we let him walk. Some days we walked and talked with him. He also tried the door knobs, looked out the curtains, would walk and eat, etc. When he moved to the Alzheimer's unit, he walked there too. They did try many drugs with him and I kept a very close eye on what he was prescribed and how it affected him, sometimes having to insist they change or stop a drug. Looking back on it years later, as irritating as it can be for the caregivers, staying mobile was probably the best thing for my dad. He did fall trying to get out of bed, resulting in a hip replacement (Alzheimer's and hospital stays are a nightmare!) and rapidly declined after that. He never walked again. It's like he forgot he knew how to walk. It's certainly very discerning in the beginning (drove my mom crazy for about a year!), but I truly think the longer you can put off medication and just accept any non-destructive, unhealthy behaviors the better off they are. Just think how healthy we all would be if we walked that much daily! But do not neglect yourself and what you need as a caregiver to provide compassionate support.
Helpful Answer (6)
Reply to campbec
Report
Londll Sep 7, 2018
That is my thought exactly but we are being told we cannot let her walk outside alone even if we have her in visual so she will be safe. They worry about her stepping into traffic or getting lost.

I do understand your mom! I know exactly how crazy it can make you!! Thank you for sharing!!!
(0)
Report
See 1 more reply
I'd discuss this with her doctor immediately.
Helpful Answer (0)
Reply to Jasmina
Report
Londll Sep 7, 2018
I did and it is a normal progression of the disease. Hard for me to accept. Thank you for your concern!!😘😘
(0)
Report
My Mom also used to walk all day long. She is almost 88 years old and about 4 years ago until last year she walked non-stop all day long. Now, she is slowing down. my mom was diagnosed with some type of Alzheimer's and dementia, although doctors were not clear what type. At the age 83, my Mom was in a serious pedestrian hit-and-run car accident where she suffered 7 to 8 strokes due to blood loss. But for the Grace of God, she lived through it; and 4 years later she shows signs of improvement or recovery from her traumatic brain injury (concussion, strokes, etc.). Those signs include tracking conversations and responding correctly or appropriately to questions or even discussions. She is aware many times of the phone conversations taking place and its content; and she replies accurately to questions or comments made by us. It's kind of freaky because we didn't expect any type of mental recovery at her age nor do we know where this is going, if anywhere. I don't know what to tell you since my Mom doesn't have FTD except to say that medical providers are often wrong on the initial diagnosis and the eventual outcomes they expect their patient to experience. My Mom's problem so far has not been anything like what the medical providers expected her to do. But then again, how often are medical providers wrong? Many, many times....
Helpful Answer (0)
Reply to MariaDinis
Report
Londll Sep 7, 2018
So very true!! It is like the twilight zone for caregivers!! Endless searched for advise and help. I have no life of my own anymore this disease and garegiving have taken it! Best of luck to you and your Mother my friend! 😪
(0)
Report
Buy the chair with the harness and teach her to knit or crochet. Never fails for dementia patients. Reports state this activity will slow down if not reverse the effect of the disease! Good luck!
Helpful Answer (0)
Reply to coppertino
Report
Daughterof1930 Sep 6, 2018
Am I reading this correctly? Tying a person down and training them to crochet will reverse dementia? Unreal!
(3)
Report
See 3 more replies
My husband has early dementia. He is 61 and was diagnosed about 6 years ago. He also walked like that. About a year ago it got worse, and he would walk the same path: outside, smoke, inside, bathroom, bedroom, change shirt, front room, back outside, and repeat. Over, and over, and over. I would just sit in the middle of the house and watch him, worrying about falls or wandering. He eventually had to be placed in skilled care for other behavioral problems, and got kicked out of one facility because they couldn’t handle the walking. Now he’s in a different facility, who handled it better. But he’s on hospice, is now wheelchair bound, and dying. Even in his very debilitated state, he still propels that wheelchair around!

The symptoms of dementia can really vary, and walking isn’t uncommon in young people. It’s so hard because they are physically strong and you can’t stop them, even though you’re trying to keep them safe. I do not think it was an anxiety issue for my husband, it was just something he knew how to do, and so he did it. He walked like that until one day he just suddenly couldn’t. It’s a phase your sister is going through, and it won’t last forever. Just know you’re not alone!
Helpful Answer (3)
Reply to Tboosrn
Report
Londll Sep 7, 2018
I can see that and it helps to know the walking is expected. Thank you for taking the time to write. How did the walking stop? In a day or gradually? Could you help me with your experience?
(0)
Report
See 1 more reply
Ashwagandha is great for stress and is naturally calming. It’s plant based with no side effects. Stay away from the drugs and give it a try, it can’t hurt. Magnesium is another great supplement that calms.
Prescription drugs are Never the answer. They only create more problems.
Also fidget cubes are good for keeping minds busy. My Mom loved hers.
Helpful Answer (0)
Reply to Snowcat60
Report
ccheno Sep 6, 2018
“Natural” substances can cause unexpected, unwanted side effects, too.
webmd.com/vitamins/ai/ingredientmono-953/ashwagandha
(1)
Report
See 1 more reply
I remember a woman from my childhood who walked and walked for hours every day. She was only about 40, and I am fairly sure it wasn't dementia. She had a son at school with me. Looking back, my guess is that it was OCD or some similar mental issue. I just looked up OCD on the net and walking was one of the behaviours on the list. There seemed to be some useful resources, perhaps you could take a look.
Helpful Answer (1)
Reply to MargaretMcKen
Report
Londll Sep 7, 2018
Thank you I will look!!
(0)
Report
This is an anxiety thing. Ask the hospice nurse if she can get a med to calm her down. They had to do this with Mom.
Helpful Answer (2)
Reply to JoAnn29
Report
Londll Sep 7, 2018
Okay we started. How long til they worked and how much did they help. What were your observations? Some walking or slumped in a chair? I'm not sure what to expect. I would love to hear your experience!!
(0)
Report
So sorry for your situation. My brother has FTD and is 58. He walked for miles ever since taking the car away. He would walk to the store many times a day. He would not accept me taking him but would accept a ride home sometimes. Everything he did was compulsive and repetitive. He always remembered how to get home and always had something he had to do. He did know us but stopped responding to us. That was two years ago. He also would come out naked and walk around the yard or put on pants over pants. He went down hill fast, losing language, major confusion,cognitive decline, total incontinence. I have been caring for him the last 2 years and keep him in locked in the house. He can no longer communicate in any way or follow any commands or instructions. He also has rigidity and not good balance. He is on pureed diet now with swallowing problems and needs to be fed, dressed and bathed. This is a very difficult brain disease and nothing like my grandmother's Alzheimer. All brain diseases are very difficult but this one is especially hard hitting at a young age and most of the help does not fit and doctors do not have a lot of experience.
Helpful Answer (7)
Reply to MarSoCal
Report
Londll Sep 7, 2018
You are the closest to being like us I have seen!! I sooooo agree with your statement! People doing the work are so helpful! It is not a fun road to travel at all!!!

Thank you for sharing!!
(0)
Report
You were very wise and lucky to have Hospice soon.
Hospice does have volunteers that will come and visit the patient. I am sure they would love to go for a walk with your sister, as long as there is a safe place to do so.
I think the longer your sister is active the better off she will be.
My Husband was on Hospice for 3 years, diagnosis was Alzheimer's (I also think he had Vascular Dementia) but I was able to keep him at home greatly due to the fantastic help I got from Hospice, the CNA as well as the Nurse and all the equipment and supplies.

Would your sister do well on a bike? Just wondering if she can do a bike a stationary one you can set it by the TV and she can watch TV or some of the bikes have a Map program so it looks like you are riding in the country or along a beach. Treadmills also have this but not sure about getting on and off a treadmill and if her balance begins to go it could be more dangerous.
Helpful Answer (1)
Reply to Grandma1954
Report
Londll Sep 3, 2018
She walks ALL day!! From 7 am to 6 pm. It is almost like OCD. Same path, same speed! If she can't walk then she is looking for a way out! Rainy days are awful because they are so hard on her. If she can't walk she is like a caged tiger! She tries the door knob every two minutes and flips light switches off and on. It is miserable for us too but we cannot let her get soaked!! Hospice would have to be here full time!! They cannot do that.

We give her Cheerios to line up and try to distract her but if she isn't walking she is miserable! Just wondering if anyone else has that problem. I hear it is common with early onset dementia.
(0)
Report
See 1 more reply
Wow. She’s so young for that. I’m so sorry. Does she seem upset about something when she’s pacing? Maybe you should ask Hospice for anti-anxiety meds? Have you asked the Hospice Nurse why they feel she needs Hospice? People have been known to “graduate” from Hospice. In any case, be glad for the help and if you feel the need so you all can get a break, ask for more.
Helpful Answer (5)
Reply to Ahmijoy
Report
Londll Sep 3, 2018
Not anxiety and I did ask the nurse why. To be honest I think they see how upset I am at the thought of losing my sister and stop. I'm going to focus on being calmer when I ask.

Not anxiety with walking!! If she doesn't walk then MAJOR anxiety!! Rainy days are awful!!
(0)
Report
See 1 more reply