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We are dealing with a possible sleep problem. Mom is 80 and does not sleep well. The hallucinations came on suddenly and have lasted 2 months. They usually occur after a nap or in the evening. Two ER trips and 3 doctor visits have not helped or distinctly tied this to the dementia. She is on no medication except Xanax when she is very upset. We are waiting for an appointment with a new neurologist. The current neurologist thought maybe she had a sleep disorder and was in a persistent sleep state, but he didn't order any tests or sleep studies. She cannot stay at home now because of the hallucinations and sleepwalking, and often does not know my father. Otherwise her memory and function is good. We feel very let down by her doctors. Any suggestions on what type of doctor to see?

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Good morning MO. Is your neurologist is experienced in treating dementia, or are they focusing more on treating the vascular disease/stroke aspect of your mom's illness? My mom was under the care of a neurologist after an MRI showed multiple areas damaged by TIA/strokes, but vascular dementia was never mentioned as a possible future outcome, in fact I had never heard of it until I found this website while desperately seeking answers to her sudden change in health.
Some on the site have mentioned either a gerontologist or a geriatric psychiatrist as being more knowledgeable in these areas and of course more elder focused.
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M.owl, she was tested for UTI during the ER visits, yes? This has to be so nerve wracking, so sorry the Dr.s aren't of any help with recs. Hope you get some more answers here!
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My wife, age 72, has Vascular Dementia and also had several strokes. We took her to a geriatric  psychiatrist. Medication has pretty well stopped the dreams and agitation outbreaks. I would also get her checked by a good cardiologist as it would be easy to have a stroke. Blood thinners are a must and maybe asperin but the doctor will answer those questions. Hope you have a good will, Living will and power of Atty. Good luck
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If she is receptive to it, consider taking her to a naturopath who is knowledgeable about nutrition, as is the case with most chiropractors and acuputurists. A well formulated low-carbohydrate, high-fat diet has been shown to improve neurological conditions (including dementia) in many.
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She needs to see a neurologist. Tell him about these issues. Sleep issues are quite common in lewy body dementia. My mom will yell out in her sleep or talk loudly in her sleep or she has dreams and cannot distinguish that what she dreamt was not real and she will think it really happened. REM Sleep disorder is what it's called. I give my mom a melatonin before bedtime to help her sleep better but she still will yell out in her sleep or talk in her sleep. I had to get a sleep machine for myself with white noise to drown her out otherwise I was not getting any sleep. I knew she was not in any harm or danger so as long as she was sleeping I figured I would try this sleep machine.
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In our area, we have Vascular Specialists - I was told to take my DH to one for his Venous Stasis Insufficiency. Your physician should be able to refer you to the right one.

We have also found that a cheap Zero Gravity Chaise ($35 @Walmart) is doing more for his Venous Insufficiency than anything else - and it's even helping his cognitive abilities. Zoloft stopped his panic attacks.

Ask your physician - he/she should be able to point you in the right direction.
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well i do not know about the vascular side of this but a good psychiatrist
my mom takes seroquel 50 mg time release ..you will know if you have one if they want to discuss the whole picture of you moms health cause something else can be wrong ..my moms will take everything in account & tell you what you need to get or do ...i hope you get the right help .. like my mom she has a catheter & the doc told us to get her on cranberry pills vitamin & i see that giving her vitamin C works too i googled that so on the 24th she goes to her urologist & we will now then if it works ..& her doc takes the whole picture in not just part -good luck
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Has she ever been tested for sleep apnea? Google sleep apnea and read up on this if don't have experience in this condition; hallucinations and sleepwalking are common symptoms. Do you have access to a sleep center managed by actual sleep doctors? If so, ask her primary care doctor or the neurologist to order a sleep study. You can still another neurologist for a second opinion on medications - but getting her evaluated by a sleep doctor is the priority here as soon as possible because her sleep walking is a safety concern for not just her but for the entire family living with her.  Neurologists treat the symptoms of sleep disorder - you need a doctor who will tell you the cause of her sleep disorder. If she does have sleep apnea, then she's not getting enough oxygen during her sleep which causes the brain to act erratically and this is resolved by use of an in-home CPAP machine. The typical cause of sleep apnea is tongue obstruction to the airway while sleeping. The CPAP machine forces the tongue back in it's place while sleeping. My mother has vascular dementia and was diagnosed with mild sleep apnea. After use of the CPAP machine, she slept wonderfully through the night was alert and focused during the day. It's not unusual that there's a link to this type of dementia and sleep apnea. Her sleep study and CPAP machine were both covered by Medicare.
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As an MD, I actually don't Like Benzo drugs (Ativan, Xanax) yet they are widely used. Depakote is supposed to be Good. I agree with Seroquel, but the minimally effective dose should be used. Low-Dose Lithium (MUCH lower than that used for Manic Depression) can be purchased over the counter. It's supposed to delay early Alzheimer's. Not sure about Multi-Infarct Dementia.
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She might benefit from a team of doctors. If she already has a neurologist, I'd consult with a geriatric psychiatrist. Medication has really helped my LO, who has Vascular Dementia,  with her sleep, mood and agitation.
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My husband had vascular dementia, but he slept better than I did! He eventually died of a major stroke. His memory was not too bad, but he couldn't draw a clock face, had depth perception issues so couldn't drive, and he had hallucinations from time to time. I still can't sleep! I take time-release melatonin and some times benadryl; I fall asleep easily enough but wake up multiple times and can't get back to sleep.
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May I suggest you contact Dr. Lord, President of the International Caregivers Association, her husband has vascular and she has helped him tremendously.
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Michigan Owl see response, Dr. Lord, is your best advisory on vascular
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Careisdiving, my alz spouse used crap & would get up several times to pee & was confused about thing over nose so I was up & again when pap squeezed I told doc was like having new born. He said put it in the closet which I did. That was 9 yrs ago.
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For sleep disorders, the appropriate doctor is a sleep specialist.

My husband was lucky enough to have a psychiatrist who specialized in sleep issues and a behavioral neurologist who consulted each other. What a helpful combination!
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@mlface: Sorry to read CPAP didn't work for you. The Alzheimer's may have made compliance to CPAP therapy difficult. Excess urination at bedtime/overnight is a symptom of sleep apnea. The nose mask may not have been the right fit for your spouse.  Did your spouse's doctor recommend trying a different type or brand of mask? My mother tried the nose one and it didn't work but the full face one did. We had to try multiple types and brands of mask before one could fit. Not all masks fit the same. If there's a true tongue obstruction to the airway but the patient can't tolerate CPAP therapy, then there are medications to relax the tongue so it's not obstructing the airway and there is also surgery to remove some of the tongue tissue so that it's not obstructing the airway. It all depends on the severity of the patient's case and what else is going on health wise. Sleep apnea isn't the only sleep disorder, but is the most common and is often not diagnosed accurately because its symptoms are common in typical neurological aging diseases, like Alzheimer's and dementia, which is why I think it wouldn't hurt for Michigan Owl to consult with an actual sleep doctor.
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I've used a CPAP (with the nose pillows) for about 6 years now. Obviously I find it helpful or I wouldn't put up with the inconvenience. But I can't begin to imagine either my mother or my husband (both with dementia) tolerating that device. Possibly if they had been using it before dementia appeared they could have continued with it. But as something new to learn and get used to? I can't think that would happen.
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In all of this conversation I do not see any specific advice just generalities. I will delve into the problem relating to old age, but take your mother to a GYN. Memory and functions are good so she is a good candidate for a different direction.  Hormonal balance. 
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I can so relate to your frustration. The drs were not forthcoming with my late hubby. I spent everyday for a few hours a day researching my late hubby's symptoms. I took him to several neurologists. This site was around then. Sure wish it had been. The members that respond on this site are on the nitty gritty frontline and that really helped me. I foynd an obscure site and by deductive reasoning concluded my late hubby had LBD. When I took him to nrurologist, the neurologist turned to me and said, "I agree with your diagnosis of LBD." From everything I have read, researched, and experienced, benzodiazepines are a big NO!!! These drugs actually turn off the executive functions of the brain. When you consider that and the fact that all dementias are shutting down the brain. The brain is dying. Why would anyone give a dementia patient a drug that escalates cebrela impairment? I have read that Serqueol has been extremely helpful but I have no actual experience with it. The thing I do know is stop using the benzodiazepines. It is very hard to find a decent dr and one that understands and is informative and straightforward with dementia and Parkensons. Look on the John Hopkins and Mayo website for medication reccomdations and talk to your dr. Please try to find a well informed dr cause benzodiazepines make the situation worse. I only speak grom my experience. I am not a dr I was on the frontline. Peace and Grace.
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Aging Care and everyone here has been THE BIGGEST help and great info for me too!!!

I love it here... super great support!!! from those who have been there and done that!

Luv u ALL!!!
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Thanks so much everyone!
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My mom has some of the usual issues of aging, sleeping too much, not eating, moving things and she is sure it is someone else, general confusion, unhappy, anxiety, seeing people in her room, scared. She is 87. My aunt suggested that she may need potassium. You get this from bananas, potatoes and beans. Started giving her mashed potatoes helped her immensely.
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My husband had sleep issues for years, after he was diagnosed with PK I found out sleep disorders are actually an early sign of PK. Finding the right Dr is the hardest part,we have tried several neurologists and geriatric Drs and none are too helpful. Just want to give drugs that actually cause worse side effects then the disease. When my husband was dealing with the his PK diagnosis, back pain and depression he told the Dr if he had a gun he would shoot himself and the Dr's replay was " I would do the same"
Good luck to you, I gave up on Drs just do what we have to do to and go to our regular PC dr when needed
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Dead on Arrival, Morphine has been a no no for me and I have always fought agains exactly what you have commented on. Your words are right on target.
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Melatonin. A natural solution without the side effects of all those horrible psych drugs. Recommended years ago by my mother's neurologist and works like a charm.
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I want to make it quite clear that when I mentioned hormones I was totally clinical. Much investigation are under way on this subject relating to dysfunctional illnesses in women post menopause and future results might well alter the taboo aspect. Doctors find testosterone reduction in a womens body can be the cause of many diseases. It is obvious that younger active women do not experience the illnesses of old age I suggest if you are interested, check the literature. My comment is in line with the professional purpose of this column.
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If her insurance will cover it, you might ask the neurologist for a referral for a neuropsychiatric exam. This is about 7 hours of testing by a neuropsychologist to get a real handle on the extent of and probable cause of dementia and recommendations for future treatment. This was extremely helpful in identifying my late husband's vascular dementia, which the neurologist thought for sure was alchoholic dementia because he drank a 6 pack per day. The psychologist said no, his symptoms pointed clearly to vascular dementia and mini-strokes too undefined to pick up on MRI. They then warned me that he was in danger of a major brain infarct within the next 3 years, so we moved to be closer to our families and he died of a major stroke 15 months later.
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Thank you all. We had a visit with the most wonderful geriatric specialist today. Finally a doctor that listened. Very compassionate too. Scheduled MRI, MRA, Blood work, sleep study, neuropsychiatric exam. No matter the outcome, at least we are trying.
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What great news! Let us know how it goes; I'm glad someone is finally listening to your concerns about your mom.
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When this happened to my 90 year old mom, the psychiatrist at the hospital added a medication to her regime that ended the bad dreams! Ask your mom's doctor about this possibility.
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