Thanks for writing in from Italy! Honestly, not a lot of doctors know much about Dementia with Lewy Bodies (LBD or DLB) in the United States, either. First, let me say that it is great you are looking into answers and that she lives with a caregiver. I am glad that you are taking positive steps to help her!
It makes sense that your mom has up and down days. People with LBD have what is called “fluctuating impairment,” which means that their level of impairment goes up and down, day by day. So, one day she may be very “with it” and another day she may be very confused. This is very normal for Dementia with Lewy Bodies. The best thing you can do is to expect that, but to also take it day by day, one day at a time.
Hallucinations are also really common for people with LBD. So, usually, sleep is also very difficult. Here are some tips to help her sleep better:
1. Find out what her sleep schedule and cycle is like. It is easier if she takes small naps during the day? Or is it better to keep her up all day, keep her engaged in activities, and then let her go to sleep so that she will be more tired? It is really up to you, her caregiver, and what works best for your mom.
2. Organize the room she sleeps in. Add a CD player or iPod with some comforting music to play during the night. Maybe add a scent (like lavender) that will smell calming throughout the night, too. Try using a nightlight to brighten the room and make it less scary.
3. Get rid of clutter in the room. People with LBD hallucinate, so you do not want them to see a coatrack in the corner and panic that it is a person. Objects they do not understand, especially when it is dark, may seem scary.
4. Find out what she’s hallucinating. Is she seeing people in the room? Animals? Find a way to solve her problem about the hallucination, meaning, if she thinks spiders are in her room, give her a spray bottle with water in it. Tell her the water spray bottle is bug spray, and it will give her the chance to get rid of the spiders.
5. Check her medications. Some medications make people with LBD hallucinate more, such as certain medications that slow Alzheimer’s disease (Aricept, Namenda) and can make LBD worse.
I hope that these tips help you! Best of luck.