My 86 yr old mother has moderate to severe dementia. She lives in an independent living home with a great deal of help (daily) from my sister. Of course, she thinks she is independent and does not have dementia. She has been having hallucinations and delusions for 3 years, but they come and go, but lately, it has gotten worse. She sees people and animals in her apt during the day (and night), and thinks they are taking her things, and is somewhat frightened by these people she sees, and isn't sleeping well. We will have her checked for UTI, but wondering if it is time to ask the doctor for something to control her hallucinations? She has not become aggressive, and no big personality changes. We hate to start these until it is really necessary but worrying about what she might do. She wants to call the police.
My answer is before she needs them. Having a good dicussion about what the future of the illness might be allows everyone to calmly plan and the caregiver to do their own research. In my experience seroquil works extremely well or makes everything far worse but you do know after one dose and the good effects are wonderful as Jeannie found out. I personally was given it as a sleep aid one night in the hospital. I was not in any way disturbed or psychotic and fully co-operative with the staff. I decided to take it anyway and it had absolutely no effect and did not even help me sleep. There are many other meds that can be tried which is why research before making a decision is helpful. The older we all get the more unpredictible the health and functions of our kidneys and liver become and the posibility of a culmative effect becomes more real.. The kidneys and liver are essential for the breakdown and elimination of many things including drugs which is why some medications are simply not recommended for those over 70. This is a blanket warning but the individual Dr can gauge the health of these organs and base his prescription choices on blood test results if he has any doubts.
So finally don't wait for a crisis before making a plan
Seroquel is a powerful drug and should not be handed out like candy. But I know that it is often used for elderly people with dementia. It was extremely effective for my husband. I do not know if I could have kept him home for the 10-year journey without it. We were fortunate to be seeing one of the leading neurologists in the country (if not the world) specializing in the kind of dementia my husband had. In consultation with my husband's sleep psychiatrist they agreed that it was worth trying seroquel for him. It was awesome! I'm just pointing out that it isn't only internists who are willing to prescribe it for elderly dementia patients. (My husband had heart problems, too.)
Seroquel had a very immediate impact for my husband, and it zonked him out for about two hours. I just learned to give it to him in the bedroom, right before he got into bed. If he had to get up later in the night it was no problem, but I would have had a hard time getting him up within 2 hours. I know others who take seroquel several times a day. And I know others for whom it didn't work at all. (It is commonly prescribed to people with LBD, so I've heard a lot about it in my local support group.)
People who have bi-polar disorder may take 400 to 700 mg of seroquel, so you can see that the 25 mg Mom's doctor prescribed is very low. Mom doesn't have one of the disorders it is usually used for. But that doesn't mean it won't work for her. My husband started at 25 mg, slowly built to 100 mg, and stayed at that for 9 years. We took him off seroquel on hospice but quickly put him back on it ... it was still working and still providing him comfort.
My heart goes out to you theresa2. It is not easy to contemplate taking such strong drugs or giving them to a loved one. Hugs to you as you struggle with the decision.
Hallucinations and delusions can be particularly difficult to treat. Discuss her symptoms (time of day, repeating patterns, her reactions, etc.) with her doctor. If the doctor has a drug recommendation, give it a try. Watch results carefully.
Some drugs are most effective in the early stages of dementia. Putting off starting them doesn't make sense (to me). Others should be considered when new worrisome symptoms appear. Hallucinations don't need to be treated at all if they are not bothering the patient. For example, I knew a minister with dementia who hallucinated children in his house. No problem for him -- he enjoyed children. But he wanted his wife to set places for them at the table. She'd tell him that their parents were on the way to pick them up, or she had just served them a substantial snack as they did their homework. The hallucinations/delusions didn't need to be treated.
Since her delusions frighten your mom, you and your sister might consider ways you can calm her down without arguing about the delusion, and also to discuss it with her doctor.
Definitely check for the UTI!
Come back and tell us how things work out for you. We learn from each other!