Expert: Mary Gordon - 2/10/2009

Question
My 88 year old mother was diagnosed with Parkinson's two years ago. In the past week she was diagnosed with Lewy body disease. She lives in a retirement community. In the past six months she has been having 'strange spells' in the morning and is frightened. She is confused about pills, she frequently falls. She was on sinemet which has been reduced to help with the postural hypotension. I am the only daughter ( my brother is in the US) and don't know what to expect and how rapidly patients generally decline. Her care is started to take a toll and I worry about how we will care for her.
Thanks

Answer
Hi Carole, about 30% of patients who end up diagnosed with Lewy Body dementia start with classical Parkinson's disease and later go on to develop dementia. It does have some distinct features in the earlier phases.

Most people will initially report memory issues. In some people, the first thing that is noticed is "speech block" - problems with word-finding, visuospatial difficulties (such as problems with navigating in an unfamiliar area). Inattention, mental inflexibility, indecisiveness and lack of judgement, together with loss of insight, may also develop in the early stages of the disease. In other words, they undergo some strange personality changes, and can't see what is screamingly obvious to others. They can't see their own deficits. These things happen with other dementias, but not so early on. They also start to fall early on - which is something you mention her experiencing.

One feature that is often really striking, are huge fluctuations in cognitive ability (i.e. they are fine in the morning but very confused later in the day, or even in a stupor, and then back to themselves by bedtime, or they have days when they seem fine, and days when they are totally out of it).  It isn't that this doesn't happen with other dementias - it is just much more pronounced and dramatic in Lewy Body.   

Another striking feature are the hallucinations that many people with Lewy Body experience. They can quite literally see very vivid, detailed things that are not there, but that seem completely real. To give you an example, a friend of mine's mother had Lewy Body. She would see animals and people in her room that looked so real to her that she could describe their clothing. You can imagine how upsetting it was for both her and her daughter - my friend would be up at 3 AM trying to convince her mother to go back to bed - while her mother would think the daughter was the crazy one, since who can go to bed when there is a strange man wearing a green hat in the living room who won't leave.  They can also have delusions which are crazy misinterpretations of real events, such as thinking people on TV are looking at you and talking to you.   

Here are a couple of good links.
http://www.nottingham.ac.uk/pathology/lewy/lewyhome.html
http://www.lbda.org/
http://www.lewybodyjournal.org/links.html#general

My advice - not to scare you - but be a pessimist and plan for worst case. That way you are ready with a plan no matter what happens. And if she is better than you expect, and you don't need your plan for a while, you can be pleasantly surprised and relieved.  There is nothing more stressful than not having done your research and explored your options, and being unprepared. Then when a disaster happens, you are plunged into a bad situation where you are scrambling for what to do, and have to take what you can get, rather than the best option.

I know this sounds really awful - but right now - today - this is as good as she is going to get, and its down hill from here. Progressive dementia is a one way road. I suspect she already needs more support and supervision than is available in most retirement communities. Do they offer graduated care as she declines? What supports can they offer - even on a temporary basis. Can you ask them to take charge of her medications, for example? Can she get help with dressing and bathing if she needs it?
Will they make sure she comes to meals? Is she safe to be alone if she is falling? Might she get lost? Does she have access to appliances that might be dangerous if she is confused?

If they can't offer her increasing amounts of appropriate assistance, time to start looking for other options. You want to be prepared for the day when they say she is too impaired mentally or physically to stay there and be safe. Assume she is close to that point and find out what is out there and available to you. Look for options that might work for you as well as her. You can't look out for her if the options add to your stress, such as being too far away from where you live. You are going to feel better just having a viable plan ready.  

Most experts believe that the rate of decline and mortality in LBD is similar to that of Alzheimer's disease (i.e. 3-7 years) but some studies indicate shorter survival for patients who have dementia with Lewy bodies. The fact your mother is 88 years old also means that she likely has other health issues that her dementia will complicate (i.e. you may decide that it is not worth putting her through various treatments or surgeries for other issues when her quality of life is already limited). As you can appreciate, having a dementia, also means it can be very difficult to detect other health problems.

A book that might help you is called The 36 Hour Day by Mace and Rabin, 4th edition published in 2006. It is full of helpful insights and tips for dealing with a loved one with dementia.

I don't want to overwhelm you with information. I know you are reeling from her recent diagnosis. One foot in front of the other. Eat the elephant one bite at a time. Do some research. Go talk to the administration at the retirement residence about her situation and what they can advise. Start looking into all the local alternatives. Contact your local elder care organizations and agencies to ask for advice and alternatives.

Come back and ask anything you want - I don't know where you live, but I'm happy to look up some local leads if I know where on the planet you are at!

Most of all, deep breath and hang in there. She's lucky to have you in her corner.

Mary G.