Dentists, Dental Work and Lewy Body Dementia. How To Make the Most of An Unpleasant Experience.Going to the dentist can be highly stressful for anyone. For someone with dementia, it can be terrifying. There is a lot of worry-inducing, unfamiliar equipment, surgical-style implements, an antiseptic atmosphere, people in lab coats and masks: it is all very disconcerting, especially if one tends to have some paranoia. When deciding how, or whether to proceed with dental work, you will have to analyze what is possible, and whether it is viable.

Your own attitude affects the outcome too. If you have anxiety or discomfort about dentists, they can influence your loved one — many people have no fear about this whatsoever, but they will be strongly affected if they sense that you’re worried. People with Lewy Body Dementia can be remarkably aware of, and sensitive to facial expressions, body language, fidgeting, and other unspoken cues, in addition to what’s actually said. Make the experience as good as it can be by being as positive, light and calm as you can.

Dentists: Assess, Analyze and Advise Them In Advance

You may be able to find a great dental professional by contacting your local Alzheimer’s chapter, or a seniors group or a nursing home in your area. Hospitals frequently have well-equipped dental divisions that can handle almost anything, but for someone with mild LBD issues, it may provoke much more worry since hospital units often look like war-zone operating rooms with an intimidating array of surgical implements and devices.

Choose the dentist or dental surgeon very carefully and rigorously. You and your loved one have to be comfortable and confident with the experience. This can be affected by many elements:

  • familiarity of dealing with cognitive and behavioural issues
  • appearance and attitudes of the staff and specialist
  • authenticity of their friendliness and smiles
  • the appearance of the suite and comfort of the chair
  • noise level of equipment and office
  • degree of local accent and ease of understanding their voice
  • volume of activity and passersby; location and distance
  • familiarity or commonalities
  • music and waiting room environment, etc.

All are valid points for analysis of whether you’ll be comfortable, and whether you’re likely to have a successful experience. Ensure that they are aware of all medications that are being administered in advance. For example, typical blood thinners can cause excessive or prolonged bleeding which can be very problematic, especially if there are swallowing problems.

If you have a specialist you’re already comfortable with and have been using for some time, contact them in advance and let them know that their client has developed Lewy Body Dementia, and give them information on what they should expect, and how they should prepare and behave.

Is The Dental Work Beneficial? Actually Required? Enquire Assertively.

Dentists often have planned frequencies for cleaning, filling replacement, whitening, etc. Be careful about what you decide to proceed with. Critically analyze if this is merely something that is recommended — but actually unnecessary — or vital. Much that is typically suggested is merely cosmetic, or because it would be done under normal circumstances. Often things are promoted only because they are highly profitable for the clinic. Only that which is vital should be acted upon. Be assertive, and question every recommendation on the basis of whether it is needed, and whether it will actually prevent or cure a serious problem.

Hygiene to prevent infections is vital. Cleaning and cavity repair is also necessary. Anything else should be investigated: ask what the benefits actually are, and what would happen if the work was not done, and when it might become a bigger issue.

Be conservative in your approach to dental surgery, extraction and procedures; be realistic about your expectations of success with dental appliances; only use a pre-screened specialist you’re comfortable with; and be rigorous in pursuit of regular dental exams and cleanings for both yourself, and anyone with dementia.

Provide Staff with Full Disclosure about Lewy Body Dementia

Tell the staff that your loved one has Lewy Body Dementia, and that they may behave unexpectedly. Here are some things you might want to advise them about.

The dental patient with LBD may:

  • misuse words, leading to inappropriate responses
  • imply, or act like they understand, when they do not
  • be unresponsive to requests and commands from incomprehension
  • have difficulty swallowing or spitting on command
  • be stiff and have difficulty sitting up or directing spit to a basin
  • react strongly to loud sounds, pokes and prodding
  • need extra reassurance
  • benefit from proximity to their loved one
  • may need figurative, or literal hand holding, and
  • have other unusual behaviours that may be unique to your particular situation.
What to Do Before and During Dental Work

When you’ve chosen your dentist, make sure they know what to expect, and what you expect.

There are many considerations, including the following:

  • Decide whether you should let your loved one know an appointment is upcoming based on compassionate analysis. It may be better to say nothing, and then use a “fiblet” to diminish anxiety about an upcoming procedure.
  • You should be able to be easily seen and in view of your loved one during the entire process, to add reassurance as needed.  Remembering how to “spit” and being able to position themselves may be an unrealistic expectation.
  • Extra care for suction to remove saliva and dental solutions will likely be needed to avoid swallowing/choking issues.
  • The patient’s position may have to be more upright to avoid swallowing problems, which can be significant if they are reclined.
  • Have the specialist clearly describe what they are doing — before they do it — throughout the appointment to make sure the patient is comfortable with what is going to happen.
  • Advise the staff to be as calm as possible, and to use short, simple, easy to follow commands.
  • Request more frequent breaks in the process than may normally be typical.
  • Get tinted glasses so the work light does not blind them, but so they can still see if they want to (instead of using a blackout mask).
  • Ask if they can play music during the process, and ask that any staff members outside the room be especially quiet and stop talking.
  • Have them close the door if possible so that other voices are not distracting or upsetting
  • Avoid all general anaesthetics if possible, but ensure enough local numbing is used.
  • Ensure that any expected pain is provided for and able to be managed afterwards.
  • Make sure that anything left in the mouth is accounted for: sometimes they will leave gauze in which can be a choking hazard.
Follow-up Care: Ask Questions And Avoid Post-procedure Problems

After a normal appointment, once the work is complete, dentists will normally just send you on your way with only a reminder to book your next appointment. This is unacceptable in many instances with LBD. Get specific information, and write it down to make sure you understand and remember it. Ask about any issues that may crop up such as pain, and what to do if it begins. If there is a new dental appliance such as a bridge, make sure they let you know whether this is temporary or permanent, when the permanent one will be available, and if there is any risk that it could come loose and be swallowed or choked upon. There are countless possibilities, so ensure that you impart to the dental staff that your case is unusual and you need full disclosure of potential complications to prevent other, greater complications.

Some people forget their anxiety about dental work when their memory is compromised, even people who were afraid of dentists all their life. And a great many dentists are highly caring, compassionate people who only want to do what’s best, and are very warm and reassuring — you might even find that your loved one enjoys the experience.

Our family has personally had some surprisingly good interactions with dental specialists. While having two teeth removed, two more ground to the gum line, and a bridge fitted, my mother enjoyed the many smiling faces of the hygienists and specialists and even fell asleep — and the entire event went very well, including the after-care. This was primarily because of the preparation and coaching we did in advance. The same can potentially be true for you. It’s worth a try!


Timothy Hudson

13 thoughts on “Dentists and Dementia: How to Choose and What to Do

  • June 3, 2016 at 11:23 pm

    Great information. Wish there was some kind of clearinghouse for all LBD info. Seems I find most of it by happenstance or simple good luck. Appreciated this so much!

    • June 4, 2016 at 4:39 pm

      Thanks for your comment, Sherry! I hope that this website IS the clearinghouse for all LBD info, and will keep improving. It focuses on the applicable tips and techniques, solutions and salvations rather than theoretical research and medications. We’re living with Lewy right now — and now is when we need the help!

  • October 14, 2016 at 6:11 pm

    Well, we go to an oral clinic in a local community college where dental hygienists are trained and had a good experience. They recommended getting a pinpoint cavity on a back molar filled and I turned it down for now. We will continue to go for the cleanings and the pinpoint can be monitored.

    • October 15, 2016 at 5:51 pm

      There seems to be increased acknowledgement of cognitive issues in instructional planning at colleges for a variety of specialties. That’s great you had such a good experience.
      It’s up to us to keep this as a top-of-mind issue whenever possible, so even asking, and gently admonishing places that you deal with will potentially have a double benefit: Increases potential locations where people with dementia (PwD) can get good treatment, and also increases the likelihood that others will recognize there is value in providing a service to PwD. As it is, there’s discrimination in many encounters. Understandable in many respects, but discriminatory nevertheless.

  • November 11, 2016 at 5:17 pm

    Even with advance warning the dental hygienist tore into those gums causing weeks of discomfort. Never again.

  • March 2, 2018 at 7:27 pm

    Hypersensitivity to anesthetic can be a major concern for LBD patients. Has anyone had any problems?

    • March 5, 2018 at 3:33 am

      Hi Lyn: I’d always avoid anaesthetic if possible. Many procedures can be done with a local anaesthetic (freezing gums, for example), rather than a sedative or general anaesthetic. There are also topical analgesics that may help afterwards. Hope that no stronger methods are required — and you may need to convey this to the dentist or dental surgeon, that a person with Levy Body Dementia is likely to react unusually badly to what would be fine for many other people.
      Strength to you! Timothy Hudson.

  • February 24, 2019 at 7:14 am

    Will OHIP provide financial assistance with dental treatment urgently required by a LWD patient?

    • February 24, 2019 at 3:13 pm

      Hi Gordon. U fortunately, even though I am also in Ontario, I do not know about the regulations and eligibility for OHIP coverage for dental work. I always paid out of pocket, and had. Or considered it at the time. It’s possible that it would depend on where the procedure was done — I believe that another family member had emergency consultations and a dental procedure at Sunnybrook Hospital which was OHIP covered but I think this may have happened since it was initiated by another doctor in the hospital and not a private practice dentist.
      I hope you can get it worked out — tech and dental condition are so important for health!
      Strength to you! Timothy Hudson

  • January 15, 2020 at 10:16 pm

    Hi Mr. Hudson. I have a question, if your able to answer. My Mom has Dementia. I believe it’s Mixed. Due to CSVD, Carotid Stenosis and Severe Aortic Stenosis. She has also had Hallucinations off and on. Especially when she was given Tramadol for her back. And then again separately with Elavil. She is having other dream state issues as well. She went to the dentist yesterday. They did a Root Canal on one tooth. As far as I know, they used local numbing topical meds. And 2 numbing injections. She said she had a rough night and was having Hallucinations and lots of weird dreams. Couldn’t sleep. She thinks it’s from the meds they used. Could it be that, or just her Dementia acting up? She has more upcoming dental work. So, I’m concerned.

    • January 22, 2020 at 5:33 pm

      Sorry for how things have gone with your Mom, Mo. I am not a doctor, so can’t give medical advice. But from my personal experience, dental work — like trauma of any sort, as well as infections, and underlying medical issues — can contribute to unusual cognition, emotions, behaviours, hallucinations, delusions, etc. I would suspect that the post-dental-work hallucinations and weird dreams may be more to do with the pain and change of routine she experienced at the dentist, and subsequent. A primary key, for my mom, was to avoid anaesthetics, and most pain-killers (particularly opioids, etc). For her, traditional Tylenol/Acetominaphen worked surprisingly well for many conditions that’d normally be prescribed something much stronger. Personally, I would always go to a max dose of this type of medication before anything stronger. Be aware of the constipating effects of many meds: we had to counter this with extra hydration and fibre, etc. I don’t know about her condition, so you should always consult with a professional, of course.
      Here’s hoping the upcoming dental work goes well, and that she has a smooth recovery.
      Strength to you! Timothy Hudson

  • September 9, 2020 at 4:53 pm

    As a seasoned dentist who has treated many patients over the years with dementia, I think it is very irresponsible to state that some treatment is not necessary and the implication that we as medical professionals are motivated by “high profit” procedures. This is offensive. I am not saying that in any profession there isn’t a monetary motivator, however this page is for support for family of people suffering from dementia, and the conversation that you have created about finances being a motivator in dentistry significantly decreases our ability to do our jobs as it creates an antagonistic relationship. I strongly urge you to restructure your commentary on dental professionals. Those of us who routinely see patients like this, and others with degenerative diseases, understand how difficult it can be and are generally well trained on what procedures need to happen and which do not. Perhaps let us not assume malicious intent, and consider that we as dentists have worked very hard and long to care for people in our community in a generally thankless job where we are expected to be 100% perfect 100% of the time. Thank you.

    • October 26, 2020 at 12:34 am

      I do not intend, nor do I believe I am suggesting what you allege. You may read into it that way, but I have had great luck with many types of specialists, I only caution people to be aware, and exercise due diligence. If you believe this article presents it as you suggest, I apologize. But I certainly have no intention of changing it. I’m glad you are practicing with such a good ethical approach. Here’s to that becoming an ever-more-common standard.
      Timothy Hudson


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