My 94-year-old mother was diagnosed this week with very early LBD (no parkinsonism). She and my 95-year-old live nearby and are in good general health, at least for that age! She has some delusional processes, sleep disturbance, daytime sleepiness, visuo-perceptual problems, and her executive function is quite poor; she was in very good cognitive health until less than a year ago and much of her cognitive function (short-term memory, verbal ability, spatial orientation) is pretty much intact.

The good news: we have excellent care (I'm on the faculty in the med school, have been in Alzheimer's research for 25 years, and she is seeing a neurologist who is one of the top people in the world in dementia research and clinical care, and he has consulted with two or three other top folks.) The retirement community where they live has continuing care (skilled nursing, dementia special care, and assisted living) for when they can no longer be independent. I have already arranged for someone to come help a couple of hours, a couple of mornings a week.

The bad news: As everyone on this list knows with much more direct experience than I, the future is unknown and probably very challenging. My dad is frightened and depressed. And my mother already has spells of only very tenuous connection to the practical world.

I have already made use of the resources to help my dad understand what is happening, and have found much practical advice. I'm grateful already for the presence of this community - Laurel

Laurel,

I'm always amazed when MDs can make the diagnosis in the absence of parkinsonism. It's remarkable. If you are able, please list the name and affiliation of the MD who diagnosed your mother.

How fortunate that they are part of a continuing care community. Are there any caregiver support groups that your father can join -- either in that community or through the local Alzheimer's Association?

Robin

Hi Robin,
My mom was diagnosed by Dr. Charles DeCarli at UC Davis. I have very high regard for Charlie's clinical insight as well as his research skills; he's a research colleague and friend for many years, though mostly on AD. Charlie also talked to Ron Petersen, who is another friend and colleague of long standing, and a couple of other guys we know. (It's convenient that they were all together at AAN last week; I had skipped that one.) My mom is somewhat atypical for LBD in that she had no evidence of parkinsonism even on a careful clinical exam. We had considered AD as an alternative diagnosis, but the relative preservation of short-term memory and the very persistent delusions (infrequent but pretty dramatic), plus sleep disturbances and executive function problems, finally tilted the diagnosis to LBD, and the guys all agreed on that as primary. She very likely has a little mixed pathology, given that she is 94, but of course we have no way of knowing without post mortem. Her MRI was consistent with either diagnosis and pretty much ruled out vascular origins.

Sadly, my best friend from childhood was diagnosed with AD by Charlie just a year ago, only 62, but we found out that she is homozygous for ApoE4. She's in a clinical trial and seems to be holding her own for the moment.

So I feel an even greater sense of urgency with research...
Laurel

PS, on my dad: our local Alzheimer's Disease Center is very good (I know some of the social workers fairly well), and there are also some local support groups. But it's going to be a delicate venture to get my dad engaged. Right now he is feeling overwhelmed, and anything new will feel impossibly daunting. And of course he is from the generation that believes in toughing it out, whatever happens! We're taking it gently right now, but between my husband, whom my dad really trusts and enjoys, my daughter and her husband and kids (2 and 7), who live nearby, and our excellent PCP, we will find ways to help comfort and support him. He is still very independent - still drives, for example - but the burden of caregiving is already wearing on him visibly.
Laurel

Laurel, welcome to a wonderful, caring and understanding community. I'm so sorry for your need to be here, but you've come to the right place. Come here often - it a great source of comfort, Ger xxx

Laurel - welcome, and I'm so happy that your parents are receiving such excellent care and are in a continuing care community. Those two things will help make theirs and your lives so much easier. (not to say that there still aren't tough issues to deal with)
I hope you stop by often. Lynn

Laural,
Welcome to the LBDA forums, it is a place for good information and comfort. Thank you for sharing the name of the DX'ing Doctor, I am sure it will help someone else in the area. Your parents are in a place that will help them.

Come join us often and I wish you and your family well!

Welcome, Laurel.

Gee, you'd think if you made it 94 years you'd be home free. Darn! Not what anyone would wish for your parents' last years.

No one here would disagree about the urgency of research.

Jeanne

This is a devastating illness on all family members. I hope you find some comfort here. And I am eager for you to share the knowledge you have with us. Welcome. Smiles, Nan

A warm welcome, Laurel! Glad you found our forum. Hugs and prayers.