Living with dementia means you must pay attention to behavior patterns. It may help to keep a diary of activities and behaviors during the day and evening in order to determine if the behavior occurs after a specific event or activity. You may have to avoid visitors, children, and certain activities to prevent symptoms, or you may have to restrict certain foods that appear to be causing symptoms.
If your loved one is repeatedly irritable, and none of your efforts work to prevent the episodes, physical discomfort could be the cause. An elderly person who is confused may not verbalize pain or discomfort, but that could very well be the reason for the behavior. Try asking questions of your loved one – preferably those that will elicit “yes” or “no” answers, such as: “Does your stomach hurt?” “Does your head hurt?” A physical examination may be helpful to determine if there is some problem that can be alleviated with medication. If the behavior comes on suddenly and remains consistent for a period of time, a new physical ailment may very well be the culprit. Every minor physical difficulty can contribute to Sundown symptoms, so be sure to see a physician if you suspect a physical problem.
Tell the person what you want him or her to do, not what you don’t want. Positive instructions will be easier to remember. You may also need to be specific in your instructions, just as you would with a small child. As difficult as it can be, remain patient with your Sundown sufferer. Speak slowly, clearly, and calmly. No matter how agitated or angry he or she becomes, it will only make things worse if you match the emotion. Remaining calm will help the episode to pass by faster.
If someone you know exhibits symptoms of confusion or memory loss, see a doctor immediately. Obtaining a proper diagnosis in the early stages of the disease is very important. Some forms of dementia are reversible, and in rare cases, the symptoms are even caused by a reaction to a medication.
The Dangerous Symptom of Wandering
Wandering is a symptom of Sundown Syndrome that can put your loved one in danger. You may have to install a fence with locked gates if you need to give the Sundown sufferer access to the outdoors. Put an identification bracelet on the person’s wrist, and alert the neighborhood about the possibility that your loved one may get lost.
Of course, locks that can’t be opened from the inside are your best bet. This is difficult, as it may cause stress to the Sundowner’s sufferer, but it’s a better solution than the dangers of wandering. It also will offer you a better night’s sleep than warning bells on the doors, which will only awaken you every time your loved one tries to leave.
Just as you wouldn’t leave a small child alone in a car, never leave a person with any type of dementia alone in a car. Confused people can much too easily forget they’re waiting for someone and start the car or wander off.
Note that there is some evidence that wandering at night can be an indication of congestive heart failure. If your loved one begins to wander, your first action should be a cardiology examination.
People with Sundown Syndrome may lose their ability to understand your need for privacy, especially if they wander. While you work hard to be sensitive to your loved one’s needs, don’t forget your own. If necessary, install locks on your bedroom and bathroom doors. If this proves stressful for the Sundown sufferer, you can try setting a timer to reassure the person that you will return when the timer goes off. This may or may not work, but there’s a good chance it will alleviate the stress by giving a specific time for your return rather than something open-ended and abstract.
Teresa Brady says
I am so thankful I ran across this website! I have learned so much from all of the comments. I am guardian of my 63-year-old brother who has down syndrome and alzheimers. He also has a hiatal hernia and gets iron infusions for severe anemia. The Sundowners has gotten so bad that we had to put a gate across his door to keep him safe at night. The last month has been so depressing for us. He cries alot, and makes loud animal noises. His PCM prescribed Ambien but he acts even more spacy with it. It doesn’t seem to help him have a good night’s rest. I am interested in hearing more comments about Haldol or anything else that may help.
Aveta says
Hello,
I too have a brother with downs age 59 who just started acting strange.
Any information that you would share with me I would appreciate it. We think that he has sundowners syndrome. I am having a hard time finding help or a doctor that knows what to do with him. He keeps a UTI I wonder if there is some
connection with the disease.
Have a nice weekend.
Kathleen Miller says
“First-generation antipsychotic medications, such as haloperidol (Haldol), should not be used to treat Lewy body dementia. They may cause severe confusion, severe Parkinsonism, sedation and sometimes even death. Very rarely, certain second-generation antipsychotics may be prescribed for a short time at a low dose but only if the benefits outweigh the risks.” This was extracted from the Mayo Clinic website. If you suspect Lewy Body dementia – do NOT use Haldol.
Donna says
Phew , been reading all these posts. I am carer for my live in my home ,89 mother.I am divorced and my children have left home so am the carer. Speedy nursescome in twice a week for full washing, but aside from that its all down to me. I have become a prisoner in my own home and am daeling with mixed emotions as well as being very worn out. My mother deteriorates at night, starting in the evening, cannot turn herself or get up etc . Feels she needs to pee several times, which is very exhausting as she can hardly hold her own weight. She cannot wash or dress herself,walks a few steps with a frame in the day. At night she is constantly calling my name in a horrible panis stricken way whish eats away at me. I have to get out of earshot and ignore her sometimes otherwise its is horribly draining. I feel as if my life is on hold ( but I except this in a calm way mostly and try to use the time mentally) sometimes feel I can’t go on. Nearly every day my mothe rsays she wishes she were dead…………….
Eliz says
Oh I so feel for you, exactly what my Mom did.She passed away last summer but my life was the same. I got out 4 hrs. A week for groceries. The rest of the time it was just us. Mom couldn’t walk at all so always transfers , toilet, chair, bed etc. I lost 28 lbs. And I was already thin. The only thing I can say is try to take time to enjoy her everyday even if it’s just to give her something she loves to eat or drink. Try to connect with her as your Mom even tho you know your the mom now. I would try to make my mom laugh, but toward the end it was not easy and very exhausting to even keep her a little happy. Never a nights sleep. I finally had to move my mom so I could not hear her yelling for me all night. I would check on her and know she was safe , but I had to put a stop to the constant demands for water and the bathroom. Hang tough, try not to beat yourself up too much, even if it was perfect we would always have sadness and regrets…
HELEN says
To all of you caregivers: You all deserve your cloud in heaven. I can understand what you are going through but the only thing I can offer is to try to remember this is NOT the ‘real’ personality of your parent, I feel sure your parent would never want to hurt your feelings.
I am 63 years old and have had Multiple Sclerosis for 15 years. About 10 years ago I started having “rage attacks”, although I had really had a slowly progressing depression because I had MS. My urologist put me on IMIPRAMINE for urinary incontinence. Unfortunately the medication did nothing for my incontinence, but it was the BEST thing to help my depression and rage attacks.
Ask your parent’s doctor if this older medication might help the unpleasant attitude of your parent, it might help with urinary incontinence, too. It helped me in just a couple of days, so maybe it would be worth a try. (The only negative effect I have had is that I have had to continually increase the dosage over the years, but maybe your parent will not have that problem, but you can be on the watch for that if the attitude starts to regress.)
My best wished to all of you. HELEN
Eva says
Oh my gosh! My husband was diagnosed with MS in 2009. He’s 68 years old, and has been seeing a Pain mgmt Dr. for severe and chronic pain. He has suffered with depression all of his adult life, so he’s on a coctail of 5 psych meds (low dose), Methadone, Baclofen, Neurontin, Copaxone. He also has Diabetes. I’m a nurse, so I’ve known about Sundowner’s. Over the last 3 weeks, I have watched him become very confused in the evenings, especially if he’s just awakened from a nap. My father died from Alzheimer’s, though he was physically a healthy man and had no other diseases. I can’t tell you what it means to me to hear there may be a solution (Imipramine). We were only married one year when he was diagnosed. I am his only caretaker. And I’m still recovering from breast cancer treatment, so I don’t have the energy resources I once did. But thank you for giving me some hope.
K says
Thanks for the drug recommendation. We’ve been having such challenges. 🙂
Maryann says
My 96 year old mother just started exhibiting sundowners syndrome. She has been in a long term nursing facility since end of August. Her hallucinations sometimes coincide with a UTI which seem to be prevalent in nursing facilities. So she has a standing order on her chart that if her state of mind changes a urinalysis is done immediately. She communicates to me about her night terrors and it is always with a phone call about 8 am the next morning. I notice how intense they are becoming. She often thinks that the staff is plotting to kill her and her room mate is saying vulgar things about her children. It is becoming increasingly harder to help her out of these incidents. They are definitely happening more often. But just like a lot of you have said, she is fine in the day. I thank God for her afternoons because we still enjoy each other. Ii have requested a psychological evaluation on this Monday so hopefully some type of medication will be suggested.I have read many of the responses and feel I have gotten a very quick and thorough education on sundowners. I hope and pray that the rest of her life will not be with any violence and paranoia.
Maryann
chasity says
Well I take care of my husband’d mother for the last 6 yrs.She has Alzheimer and it has gotten worse,the doctors prescribed all sorts of medication for her in the last six yrs and the only thing that seems to help some is zyprexa twice daily and trazadone at bedtime which I give her a 1/2 hour before bedtime..She does have sun downers also but with the medication she sleeps through the night but she is an early rise my problem is from 5 in the morning until 8 evening.She seems to think she’s and opera singer or something,she sings all day up until bedtime.
Chasity
Kris says
I have been taking care of my sister-in-law’s mother for 5 months now. She started with her dememtia about 5 years ago but after breaking her hip last October, there has been a real downhill decline. She also had a bed fall Christmas Eve and developed a brainbleed. It now covers 1/3 of the left side of her brain. I have been trying to tell her daughter that she is showing definate signs of sundowners. She gets so fearful when afternoon comes and starts wanting to go home.. she is at home. She asks about her mama and wants to call her to come over and stay with her.
The bleed has made her legs really weak and painful so she can’t get around without help and her walker. She constantly tries to get out of her recliner if I try to go to the bathroom. Terrified to be by herself.
The one difference I am thankful for is the fact that once she goes to sleep at night, she sleeps sound. Only up once for the bathroom.
I am just so exhausted. I stay 24/7 with her and have a girl that comes one day a week for 5 hrs.
I never thought something like this would be so hard.
Barbara S. says
My mom is 84 yrs. old. She is in early stage dementia but it’s progressing a lot faster than we had expected. Myself & 4 brothers and their wives are share the care-taking responsibilities. We have someone come in 3 days a week for 2 hrs. She has recently begun to have these symptoms of Sundowners. She’ll call one of her boys houses and is in a panic because she doesn’t know how she’s going to get home (she is in her home). She is so confused about so many things, it just scares me. I don’t think she’ll wander, especially at night because she doesn’t like the dark. I have made an appt. to get an evaluation done on her. ) Her PC, Loving Care Company (people that come in 3 X a week and my brothers & I, are trying to keep her in her mobile home, in a mobile park, for as long as we possibly can. It’s looks like one of the solutions to keep them from wandering is outside locks. This makes me uncomfortable for fear that when she realizes she can’t get out. she’ll be even more afraid. Also, she lives by herself, 3 of my brothers are within 1.3 miles of her and she has Lifeline. I am 7 miles away and try to visit her as many times a week as 3 – 4. However, someone checks on her everyday. I’m not looking for answers, just helpful hints, and I just needed to vent. Thank you for listening.
Shannon says
@Barbara S., there are also some good monitoring systems (i.e. that can notify you/someone based on a door being opened, don’t know if her current system would have that capability but it might be worth switching if not)-those might be an option if she has not yet wandered…always good to prepare as it is a common issue. You can also register with the Alzheimer’s Assoc.-Safe Return program. We also have a program in our local area run via the police department using GPS technology. All worth checking in to for your peace of mind and her continued safety.
Especially when you have caregivers helping out, may be a good idea to keep a little log. This can help communicate between caregivers and family members (how she’s doing, changes, things that helped etc.) and note patterns.
Sue says
Hi everyone
My situation is a little different. My 85 year old father had no symthoms with memory or delusional thoughts before he went into the hospital with a heart attack and was told he needed by pass surgery. After the surgery he became agressive and try to take his ventilator out by himself and they sedated him for 6 days, then finally took out the ventilator. Since then he was moved to a rehab. He has all the signs of sundowners since then. He does not remember living in Florida thinks he is back in New York, get violence, thinks people are stealing from him etc. We have been told that this is a temporary thing and should go away in 4-6 weeks. Anyone else experience this? Help I feel Iike I have lost my father for ever.
Ann proctor says
So sorry to here your husband has huntingtons illness also sundown syndrome huntingtons it’s self is distructive illness very stressful for you and your husband decline in brainfuction an trigger bouts of aggression has the changes of beaviour will happen has the brain is not function propley then this has built up anxiety and agitation to the sundowners to happen very difficult for him to cope with and it’s not your husband fault of is unwanted behaviour it’s the illness you need guidance and full surpport for care and understanding you have to look after yourself very Mutch so and to have a clear mind has to wat happens around you do not be guilty of any out come To how this illness continues for you to carry on been there is anouth has the huntingtons it’s self is very distructive over time and the movement are very exhausting for you and your husband you are so brave and also scared at times God will keep you safe and the blessing you deserve thank you for letting me share your story love Ann x
ruth smith says
my husband has sundown syndrome an is getting worse i have a hard time adjusting to the hours of no sleep an radio an tv on at same time or him just forgetting things that is as simple as feeding himself or thinking someone is in the room an talking to them,or that they are trying to hurt him.i cant even get out of his sight he thinks i am gone for hours even if its just min.an the worst part he is only 58.i dont know what will life will be in the next year or so.if anyone has any info please help. ruth smith
Tricia says
I am so thankful I found this website. I am the primary caregiver for my 73 year old mother. She started living we me about 12 years ago. Starting last August (11) she had hernia surgery, November (11) she fell broke her hip and had hip replacement surgery, January (12) she developed pneumonia diagnosed with COPD and was in intensive care and intubated. The hospitalization in January we thought we would lose her. Then in August this year she had knee replacement surgery. Starting in September her behavior has changed. She sees people and is constantly asking me when they are leaving. She also talks alot and tells me she is talking to herself. The first episode she asked me why those people were taking her stuff. She said they were touching her paintings and everything. I said “Mom there isn’t anyone here or touching your stuff” she said “we are moving to section 8 housing”. Since that time she has hallucinated alot seeing people, dogs, and bugs. The bugs are constant. She has me come and look at all these bugs all the time. They are usually strings, paper or nothing at all. When I assure her no one is here she gets mad and says I am calling her a liar. The other night she called me to her room and wanted to know where the bathroom was in this place. She night eats too. One night she ate three different sandwiches. The next morning she said she couldn’t figure out why she was gaining weight. Another issue is she falls asleep leaning against the kitchen counter, sitting on the edge of her bed and sitting on the toliet. One day she fell in her room and her tv fell on top of her. I have know idea how in the world she managed that. Another day she feel twice in the kitchen because she fell asleep leaning against the counter. She has become meaner saying smart remarks to me and my daughter. It seems like her and my daughter argue the most. She keeps me up all night roaming around the house tearing her room apart, falling asleeping in the bathroom. It seems like I get her to bed and 15 minutes she is back up. Last night I couldn’t get her out of he bathroom to go to bed so I got a little ill with her and finally said get to bed. She finally did. She had been taking Ambiem and I thought this was the culprit so I took her off it. The doctor gave her another sleep medicationt to take and she still does it. So I tried not giving her anything and still no change. I feel like I am at the end of my rope. I have had six back surgeries and I have type 2 diabetes. I have to be so careful helping her up when she falls. I do have a brother that chooses to stay as far away as possible. He calls once in a blue moon and might visit her every couple of weeks for 20 to 30 minutes. It makes me so angry and resentful. Growing up he was the golden boy in Mom’s eyes. Well the golden boy lives ten minutes way and is no where to be found when needed. My husband gets aggravated because we can’t go any where. We are afraid to leave her home alone. My grandmother (her mom) had senile dementia and we had to put her in an nursing home. We tried with Nana by moving her to an apartment in our complex then in Mom and I. She got up and night and roamed around our apartment. I was Nana’s primary care giver till we put her in the home. I guess I am just exhausted now. My health is not the best and my daughter has Turners Syndrome. She is having some health issues too….Are there any medications that can help the symptoms of Sundowners? I am desparate and would greatly appreciate any advice, information and prayers…..
clara herrera says
I take care of my 64 yr old brother an 88 yr old mom both w dementia
am slowly losing it I can take care of mom but not my brother
he wont shave or take shower an only eats if food is served to him an wont take his meds but he can
drink an smoke pees on th bed an his clothes smells im embarrassed to take him for appt