“ I used to fear that taking medication would change my personality; now i fear that it won’t.” ~David Levy
In the last month and a half I have been dealing with (upper respiratory) infection after infection which have really got me thinking about the causes. Plus the severe dysautonomia which I have experienced recently, being a neurologists, I thought oh my!- this is one of the things that happens and usually the reason (recurrent infections) why people with Lewy body dementia (LBD) succumb to the illness leading to their demise.
I don’t have LBD however, i thought it would be a good time to discuss the clinical presentation of this illness compared to Parkinson’s. Funny thing though, I was commenting this observation with my BFF whom i was traveling with and I said jokingly – “ I know i am not demented” so can’t have that awful disease. She looked at me and responded ‘no not like all the people we have met with disease.’ I gestured in agreement. “but, your personality…” I immediately sat up becoming paranoid, ‘what’s wrong with my personality?’ I asked. She just smiled at me.
Sure I have become more outspoken but that is a factor of my getting older i assume not because of anything organic but just to make sure i had to ask a few people that known me for a long time and the conclusion- i am same crazy, stubborn, energetic, outspoken girl. ( ooh-thank God, what a relief- and don’t ask me to remember cliches because I have always gotten mixed up!)
But unfortunately the reality is that there are too many people out there who do suffer from this terrible disease which is a combination of Parkinson’s and frontal dementia/ Alzheimer’s. I have seen too many friends and patients spiral down quickly.
So, I would like to talk about what we know about LBD and how we may improve the lives of the patients and caregivers. unfortunately, there is no cure and no specific treatment for this disease as with many other neurological illnesses.
This is the 3rd most common type of dementia affecting ~5% of those older than 75 years of age.
Symptoms which are features of both Alzheimer and Parkinson’s make it a particular challenge in diagnosing. However, the KEY to diagnosis is the presence of pronounced visual hallucinations, psychiatric overtones and autoimmune problems from day one which then leads to a rapid and pronounced cognitive impairment, along with rigidity, freezing, and severe Rem behavior (often preceding) cognitive symptoms.
Interestingly, Sleep disturbances like REM behavior occurs in about 60% of parkinson’s patients while an upwards of 80% is seen in MSA ( multi-system atrophy) and LBD.
Most people live on average of 5-8 years after diagnosis but some have lived up to 20 years.
Clinically: Patients have vacillating or oscillating symptoms fluctuating from near normal to severely abnormal. These episodes of downward spiral are typically triggered by infection and medications. These patients often have periods where they return to normal or high function making some people think they are malingering or feigning illness. There is particular variation in cognition; well one day and confused and forgetful the next ..may appear as if doing on purpose which has infuriated and frustrated many a caregiver. They also exhibit decreased attention, increased sleepiness, and alertness with patterns of normalcy interspersed with decreased need for sleep, increased alertness and attentiveness. (like a yo-yo and in a step down progression each time rebounding less and less frequently back to normal).
Evolution of disease:
Prominent visual hallucinations, confusion, decreased concentration and alertness, sleep problems followed by apathy, (aphasia) speech impediments, swallowing trouble and paranoid delusion. initial treatment with Namenda makes cognition worse and worsens significantly with dopamine agonists and anticholinergic medications. Frequent falls are common often due to orhtostatic problems and fainting from autonomic dysfunction.
Subsequently, they become very weak developing frequent infections like pneumonia and other immunological infections leading to demise. by this time speech is usually very soft whisper almost inaudible or absent. This is the end stage phase
What are the risk factors?
- older age >60
- male gender
- family history of PD or LBD
- sleep disorder increases risk of LBD five -fold
- same risk factors as stroke (HTN, DM, Cholesterol) – linking it to a possible vascular etiology; interestingly not smoking just like in PD it seems to confer a positive benefit- however this does not mean you should take up smoking!
- low education
- attention deficit disorder
- Dat scan shows low dopamine uptake
- precision ct scan reveals abnormal uptake in the occipital and parietal lobes
- This is symptomatic and supportive-treat dementia aggressively with medicines like Exelon, Aricept or Razadyne.
- use of antipsychotics like seroquel and clozaril
- initiate speech therapy early on to improve not only swallowing but also speech and communication; consider feeding tube if necessary as well.
- PT to prevent falling
- monitor HTN, sugars
- prevent infections as much as possible- constant vigilance, get vaccines if needed ahead of time
- stay hydrated
- treat with bp meds and orthostatic meds
- most importantly try to establish a scheduled sleep pattern and use meds to help sleep.
- discuss end of life plans, hospice, dNr ( donot resucitate, etc)
all rights reserved Maria De Leon
2 thoughts on “Could I have Lewy Body Dementia?: by Dr. De Leon”
Useful information. My mother is 82 years old and she was diagnosed with PD 5 years ago. She can not walk now and has to be lifted to the wheelchair. Last month she was hospitalised for breathing problem. She has a feeding tube now.
i am so very sorry to hear this – is a fast decline for typical pd especially at such late onset but don’t know details. have they considered duopa pump? prayers and best of luck