See a Specialist To Get an Accurate Lewy Body Dementia Diagnosis.
Dementia with Lewy Bodies is only understood by very few in the medical profession. It is difficult to diagnose, and only highly knowledgeable doctors and specialists know much about Dementia with Lewy Bodies. Even though it’s known to be the second most common dementia after Alzheimer’s, very few people are diagnosed accurately and quickly. This makes a difference to the progression.
The only diagnosis with 100% accuracy is at autopsy. However, reasonable certainty can be obtained by diagnosis while still in early stages. Knowing that you are dealing with an “overwhelming likelihood” of Lewy Bodies is enough to get things moving in the right direction.
The Internet Is Not A Diagnostic Instrument: Don’t Diagnose Yourself.
With the staggering volume of information available on the internet, it’s easy to become convinced that you have any number of conditions. Being your own internet doctor can benefit you by keeping you informed, but is best when you know for certain what you are dealing with. I firmly believe that the best way to get an accurate diagnosis is from a skilled professional, and you can reap many benefits from working with a good one. Once you know what you’re dealing with, you can start on the path to reduce the negative impacts by making changes to medications, exercise, community support and your own plans for the future.
Many individual characteristics of Lewy Body Dementia are shared by a variety of other conditions. Symptoms are shared by Parkinson’s Disease, Alzheimer’s Disease, Schizophrenia, Frontal Temporal Dementia, Vascular Dementia, and others. It is easy to be convinced it is this one, or that one, depending on what behaviours might, perhaps, be most dramatic at any given time. It isn’t always the dramatic aspects that define the condition, it is often ones you might not think necessarily connect, such as poor balance, or acting out dreams while asleep.
From my own experience, the condition changes significantly during its progress, and having that connection with a good specialist will help you build a network to navigate the changes that occur.
Be Assertive. Get a Referral To A Neurologist or Specialist.
If you feel that things are just “not right”, and even suspect it might be dementia, then you will need the support of your primary doctor. They are the gatekeeper to the world of specialists in most cases. We needed to have a referral from one doctor to see a specialist in another discipline. This can be frustrating. Cultivate a positive relationship with your doctor as much as possible, because you will likely need to “lean on” her for quite a bit as time goes on and the condition progresses.
The sooner the diagnosis is confirmed, the sooner you can get on with mitigating its damage. This is critical. When the possible diagnosis sounds more like an upsetting or frightening sentence, procrastination is a natural reaction to the dawning of realization that something might, just might, be very wrong. Don’t delay.
Go To The Biggest Institution You Can Reach.
A hospital with higher volumes of patients will have more likely seen your particular set of symptoms than one with low volumes. Bigger cities tend to have these higher volume hospitals, and more targeted specialists.
I think it is well worth travelling a distance to get the best care, but keep in mind that you may have to go rather frequently depending on how things progress. It is also possible that once you’ve seen the key specialist, that almost everything else will be possible from a location closer to home. Balance the need for specialization and expertise with viability of reaching it.
Learn All You Can.
Learn everything you can before you meet with specialists so you can know what they’re talking about, and what questions to ask. I have found them to accept a surprising volume of questioning, when offered respectfully, and from legitimate research and the genuine desire to do the best possible for my loved one.
There are incredible resources here, and on many other websites. You may be fortunate enough to find local assistance, since support options vary by jurisdiction.
Advocate assertively on behalf of your loved one. Typically busy medical professionals will usually have very short appointments. Make sure that you make the most of the time. Be informed, prepare notes, and bring them with you so you don’t forget anything, and get to the critical points as quickly as possible so you can cover everything efficiently.
Keeping a journal is beneficial. Things in your Lewy Body journal could include changes in:
- general health
- blood pressure
- medication changes
- notes from hospitals and other specialists.
Knowing the dates, or times of day an unusual behaviour began, and its duration and potential triggers are useful details to provide your specialists. Journalling may also have the untended consequence of bringing a little relief to you: you may begin to notice that many things are temporary, and just part of the fluctuations in the wild ride of Dementia with Lewy Bodies.
Your advocacy will go a long way to proper diagnosis and treatment. This will make the best of a bad situation, and is well worth the extra effort.
Our Story: Out of Pocket Expense Was Best Investment Ever.
The family doctor of my loved one repeatedly said, “it’s fine, we’re all getting older,” when confronted with unusual behaviours or things we thought were out of the ordinary. My very proactive father finally decided his wife needed something different, and paid out of his pocket for a full range of examinations at the Toronto branch of the Cleveland Clinic. This came at great cost. But he has often said that it was the best investment he ever made. I agree.
She was rigourously tested on many aspects of her physical and cognitive abilities in 2008, when she was 78. Along with the more subtle ailments they found that had not been commented on by her other doctors, one was described as a “condition that could lead to Parkinson’s or Alzheimer’s Disease.” This led us into a scientific study program, and put us in touch with two specialists whom I consider to be at the very top of the field in Canada: one in Geriatric Psychiatry, another in Neurology and motion disorders, and the diagnosis of Dementia with Lewy Bodies.
I believe we would never have had this diagnosis had we not gone to the Cleveland Clinic. I do not endorse them above any other reputable group, but I am thankful that they got us on the right path, one which I do not believe we would’ve found had we continued with only our primary practitioner.
Next Steps: Get Help.
If you’ve got your diagnosis, or are on your way towards one, that is just one step. The most important steps will be what you do with the diagnosis.
Be strong. Be resourceful, tenacious, patient, adaptable and ingenious. You will need these strengths and more, and the best way to nurture them is to have support in this journey. Get the most you can with friends, family and community, but also make sure you check out other sources of support. There is help out there.
Strength to you!
You can listen to the story above by clicking the red “play button” below.
18 thoughts on “Get an Accurate Lewy Body Dementia Diagnosis.”
You have an excellent website for LBD. Very informative!
I went a long time before things started to occur that told me this was not an age related problem. The best diagnosis of LBD was a home visit by a GNP with extensive experience with dementia who spent two hours in our house observing my wife.
Thank you, Daine. Although the diagnosis is so crushing, knowing what you’re dealing with is critical, and it’s exceptional that you persevered to get the accurate diagnosis. So many people are undiagnosed, to great peril. Strength to you!
My wife was recently diagnosed with Lewy Body Dementia at the University of Pennsylvania Hospital.
Hi Lawrence. Sorry for the diagnosis, it’s a tough road. But knowing what the diagnosis is will help your wife get the very best possible treatment, and make things the best they can be. The University of Pennsylvania is a great diagnostic and treatment centre. You’re fortunate to have it within reach.
You’re doing a good thing.
Strength to you! Timothy Hudson
Hi, my name is Rose and my sister was recently diagnosed with Lewy Body Dementia, but at this time we don’t know any specialized center who treat this kind of illness. We live in Miami, FL
Hi Rose: Sorry for the recent diagnosis of your sister, but it’s so great that the diagnosis is done, since this means you’ll know what you’re dealing with, and will allow you to get the best possible treatment options.
There are a couple of regional centres of LBD excellence in Florida that I know of. Here’s the two that come to mind — having consultations with the best specialists can make a bit difference.
Strength to you! Timothy Hudson
My husband was diagnosed 2 years ago with Parkinson’s disease. Cognitive issues seem to come to light even with excellent congnitive tests performed two years apart. I couldn’t understand these great cognitive results compared to what I was seeing at home. We have been to several recommended doctors and to add to the confusion, two weeks ago, Ken was diagnosed with Lewy Body Dosease.
We want the best possible treatment and definite diagnosis. He is being treated by neurologists at the University of Kansas. We want to see the very best Lewy Body specialist to feel confident in his treatment as soon sad possible. Ken and Connie Luther
Kansas City, MO
Getting an LBD diagnosis is so wrenching, Connie. I’m so sorry for what’s happening with Ken. But all your tenacious advocacy for him is making a huge difference. Seeing the best specialists, going to a university health centre, and following up so effectively will provide the very best results.
As for the surprisingly good cognitive results on testing, I’d attribute that to two things, potentially: (1) The variability of the condition, which fluctuates, sometimes wildly, and those tests might’ve been on good days. And (2), “Showtime” which I’d define as the remarkable ability to perform extremely well in novel circumstances, and with people who are not the most familiar. This often makes less frequent observers doubt the realities that hands-on care partners are actually experiencing, because sometimes a person with quite advanced LBD can appear shockingly normal, and highly functional, only to be the opposite at other times. As with all things LBD-related, this varies greatly, but I have been amazed at some contrasts that I attribute to “showtime” and to the variability of the condition itself.
You’re doing heroic work — may your journey be the very best possible.
Strength to you! Timothy Hudson
For the past 5 years we have watched my father decline. Slow in movement, confidence, anxiety, confusion, pulling away from conversations and being very dependent on my mother. He shuffles when he walks and has cupped hands. With constant persistence from my sister, who lives in the same state, my father was diagnosed with Parkinson’s. Prior to this I had asked a friend about her father He portrayed the same symptoms as my dad. She said he had Lewy Bodies dementia. I kept mentioning this to my sister and then she read a book on it and was in shock. She too believes this is what he has. Now I am visiting to relieve my sister and at night my dad wakes us up , seeing things that are not there. He has 5 flashlights on his dresser that he worries about losing. He needs the flashlights to check the thermostat regularly throughout the night that is set at 77. My mother said that nights have been worse since he was on the medicine they gave my father once diagnosed with Parkinson’s.
My parents live in Boulder, Colorado. I’m willing to take him anywhere to see a specialist and maybe control the night time – at least – for the sake of my mother’s health. My mother is a very active person in her community and this is affecting her well being.
Any ideas? Thank you for your time.
That’s a tough situation, Erin. I would expect there’d be good diagnosticians and specialists in a big, modern centre like Boulder. The health of your mom could certainly be compromised, and quickly. Whatever you can do to assist them, without being asked, but use your knowledge, and intuition, of what’d make the most difference for them, will help immensely. Many parents are too proud, and too traumatized by LBD, to ask for help — especially from their own children. So whatever you can do, in whatever way, will make a transformative improvement.
You’re doing a good thing for them. Strength to you!
Hi- My brother needs to see a specialist in Lewy Body Dementia diagnosis and treatment. He lives in Springfield, MO and he wife is so supportive but is having a hard time finding a doctor. ANY recommendations would could offer would be so gratefully appreciated!
Thank you for any help you can direct us to!
Hi Gail: Unfortunately, I’m in Canada, so can’t really recommend a specific doctor outside of Toronto, where I live. One of the incredible LBD-carers Facebook groups might have someone local that could answer your question. I cannot recommend these groups highly enough. They transformed my experience with LBD as a long-time, first-hand carer.
Hope you can find some answers!
Strength to you.
My husband has seen a neurologist in October 2020 and was diagnosed with Parkinson’s. recently he mentioned lewybody dementia so we are wondering if you could point us in the right direction for a confirmation as he is setting up an appointment with him for us but it is 3 months away! We live close to Toronto and would not hesitate to go!
Sorry for what has happened to your husband, Donna. I have no means to accelerate the process, unfortunately. And sadly, three months for an appointment seems like a very quick turnaround time. I wish that wasn’t the case, since news of this sort is so worrisome, those may seem like the longest three months of your lives.
You’re doing everything right, though, by seeking out information and resources in advance, which will also allow you to pose much more informed, and important questions to the specialist when you get time for your consultation.
I hope the info on this site helps, and that things go tve very best they possibly can.
Strength to you. Timothy Hudson
Hi Timothy my name is Halina, we have a double dilemma my brother is 52 and has Down’s syndrome and Lewy Body Dementia, he now experiences seizures. He sleeps more now and is a choke hazard, we now purée his food. He no longer can walk and is in depends. He has to take quetiapine and trazodone to help him sleep. His hallucinations are just about every day. At times he does not know where he is and hollers and at times he does not recognize us and will try to fight us. We have taken him to a neurologist and his health is great no blood pressure or diabetes no cholesterol.
We are older and trying to lift and get him in bed and getting him to a quiet place without his moans and hollers at the same time at night it is a struggle because he wakes up and is so stiff we think we might hurt him trying to change or move him.
I could go on but we are at wits end. What can we do any resources? What should we be looking for are there stages to this dementia? It’s devastating to see someone so vital decline.
Very sorry for your very challenging situation, Halina. I don’t really have any really useful suggestions for you, since it seems you’re doing everything right, and with the very best interests of your brother as the top priority.
I would, however, caution you on two issues: firstly, is your own health — it sounds like lifting and transferring him may be too much of a strain, and you’re at high risk of injury to your back as well as other musculo-skeletal injuries. The second is the potential you could be harmed if he believes you to be someone he doesn’t know, and strikes out at you. Whenever there’s a potential for this, and you’ve experienced his trying to fight you, please ensure that you take every step to protect yourselves, as well as your brother, since he could also injure himself if he’s very unsettled.
I’m not sure if stages or phases of LBD apply in the same way in your case, and they’re always highly individual, regardless, but the page on Lewy Body Dementia Phases and Stages might be helpful to you (underlined text is linked).
I hope you can be proud amidst your many worries and exertions, for all the wonders you’ve achieved with your brother. It’s a powerful thing you’re doing.
Strength to you, Timothy Hudson
Hi, my husband was diagnosed with LBD a year and half ago June of 2021. He was doing well with the disease at first, when he was diagnosed. Then he reduced his food intake. He had tooth extraction in November of 2022 when he completely stopped eating and swallowing. The little food he will take in will come out. He is constantly going in and out of the hospital due to dehydration. We live in the North Carolina area. We are trying to find a doctor who specializes in LBD but I don’t think we have one here. Please advise. Thank you.
Hi Gloria: Sorry you’re having so many challenges. I believe there are qualified specialists in your area. There’s a heroic Lewy advocate who holds in-person support groups (before COVID, and maybe since, otherwise, likely by Zoom video) at Wake Forest Presbyterian Church. Her name is Pat Snyder, and you can likely reach her by email at firstname.lastname@example.org or by phone at 828-429-7905
Hope you get some improvement!
Strength and courage to you.