How do you find a palliative dentist?

LovingAwareness

Dad's dental checkup revealed deep cavities in a back upper molar underneath an existing crown, and additional cavities in the adjacent tooth. The dentist wants us to make a 2.5 hour appointment for restorative work and a new crown. Dad is Stage 5/6 and probably has life expectancy of two to four years, based on what I know of his condition. He also has stage 3b chronic kidney disease but no other health problems. The only alternative to restorative work mentioned by the dentist is extraction. Dad's PCP said she would defer to the dentist's recommendation but she advised me to question the need to do anything and said maybe antibiotics could be tried if the tooth causes problems. The problem with that approach is... potential for excruciating dental pain and a trip to the ER. I've read some of the dental message threads on this board, but still don't know what to do to minimize Dad's discomfort and risk of infection. He can no longer maintain his dental hygiene but won't let us help him brush and floss. I would kick the can down the road and just get the crown done for him, except I don't know if he could tolerate and cooperate in the procedure itself, and I also don't know if the new crown will deteriorate quickly if he can't brush and only wants to eat sugary foods. The dentist won't talk to me over the phone and wants me to come in with Dad for a consultation, probably because of HIPAA rules. She is a good dentist but I don't think she realizes what a hurdle it is for me to get time off work for yet another Dad need and to get him dressed and to an appointment. I'm looking for a geriatric or palliative dentist who understands Alzheimer's and would give a second opinion, except I can't find one in my searches - just a bunch of dentists. I want to speak to someone who understands where I'm coming from. My primary goal is to prevent him from ending up in urgent care/ER in excruciating dental pain. My secondary goal is to simplify his care and avoid complicated treatments and care instructions that are simply not going to work. How do you find an Alzheimer's dentist? What do nursing homes do about dental care? Thanks for any tips anyone has.

loveskitties

Perhaps your local council on aging or similar social services organization would be able to offer you some suggestions.

PickledCondiment

If you have a healthcare POA, the dentist can (and should) discuss any potential treatment plan with you. Ask her directly why she feels she cannot discuss the situation with you. Your dentist doesn't understand your situation as they're taught to retain, repair teeth at all cost.  They're not taught there is a point where repairing, retaining teeth isn't the best treatment plan for a patient. IMO you will doing the dentist huge educational courtesy, as the population ages more individuals will need palliative dental care. 

As is the case when acting as caregiver and interacting with providers, you will need to take the lead (firmly) and educate.  The number of providers with an understanding of dementia, etc is limited at best. You're doing the best you can for your dad, it is your right and obligation to expect and insist a provider to do the same.

dayn2nite2

I’m sure the dentist would love to make money on a new crown and root canal, but in dementia the goal is comfort.  Extract the molar.  If the cavities in adjacent teeth aren’t too bad fill them.  If they are, consider extraction.

If this dentist doesn’t understand, ditch her.  The goal is for him to be able to eat without pain or developing infection.

Rescue mom

What day2night said is good. Try to find a dentist that has experience in dealing with elderly/dementia patients. A local support group? Friends in same boat? Local Alzheimer’s Association? may be references. 

So many dentists now, IME, are just flat opposed to extraction, and I truly don’t believe it’s always money. Getting them to pull a tooth is….difficult. It seems like a whole new school of thought. I get it for most people, but dementia and the very elderly is different. 

Also—and this is strictly my personal and friends’ experiences—a dentist in private practice may be easier to work with than the big chain dental offices that seem so common now.

Palmetto Peg

If you do find a dentist willing to extract the problem tooth (or teeth), be very careful about not allowing the dentist to prescribe antibiotics, especially if your dad is in any kind of care placement.  My mother had three teeth pulled, the dentist insisted on "just in case" antibiotics, and she ended up with C-Diff colitis.  She was in assisted living at the time, but I have known people who got it in the hospital or even at home with caregivers coming in.  My mom was in the hospital for a month, where she had a stroke and ended up with a feeding tube.  She died a few months later, but in my heart I feel like this could have been prevented if she was not prescribed an unnecessary antibiotic.  C-Diff colitis is a terrible thing to see - she had explosive diarrhea, terrible stomach cramps, and at one point the doctors wanted to remove her entire colon.  

I told her dentist what had happened, and he said he had no idea there was a connection.  The main reason people get C-Diff is because the antibiotic kills off all of the good gut bacteria, allowing the bad in.  So - lesson learned.  No antibiotics unless an infection is already present.  Good luck!!!

Stuck in the middle

I had that same tooth pulled several years ago and don't miss it at all.  If my other upper rear molar were as bad as you describe, I would have it pulled whether I have two years or 20 years of eating ahead of me.  And I have dental insurance and a toothbrush.

Your dentist won't talk on the phone because she wants a "consult" so she can bill you for an office visit, in addition to a few thousand for the root canal & crown.  I drove 400 miles for such a consult when I had cancer; nothing but a conversation about why I should have the course of treatment on which I had already decided.  I didn't have a choice, but you do.

In your shoes, I would find a dentist on the poor side of town, who is used to treating uninsured patients who don't have and can't get the money for a crown.  I wouldn't even get the other tooth filled unless the cavity is superficial.  Wait until it hurts and get it pulled.  And the rest, one at a time as needed, since he eats sugar and can't do dental hygiene.

If I were your father, with his disease, that is what I would want you to do for me.  Root canals are no fun, and neither are deep fillings.  And don't even consider a dental implant for him.

JJ401

My first thought is to call a few of the local nursing homes and see if you can find out which dentist they refer their patients to. My second thought would be to search for a special needs dentist. If you find a listing for a pediatric special needs, you could call and ask if they know anyone who takes adults.

BassetHoundAnn

You might take a look at the web site for some of the Medicare Advantage programs and search for local dental clinics that are in-network for them. 

I've been taking my mom to a clinic that was recommended by her UnitedHealthcare Medicare Advantage web site. I've been struck by the fact that all the patients in their waiting room appear to be 85-years-plus. In contrast to my own dental clinic where the waiting room is always jammed with kids and young parents. 

The dentists and their techs have been GREAT. They've been good at recommending whether to pull teeth or ignore rotten teeth or cover stubs or rotten teeth with resin to prevent further decay. The dentists' focus is on preventing my mom pain and helping her continue to eat without pain rather than perform expensive and lengthy restorative dentistry. They've also been good--no amazing at handling her Alzheimer's meltdowns in the clinic. I would have never found this clinic had I not been searching the UnitedHealthcare web site. 

My mom is not good when it comes to dental extractions, so the dentists have been trying other techniques such as filing down broken teeth and covering the tops with resin to avoid her freaking out. Good luck! As with everything else with Alzheimer's it's a great struggle. 

harshedbuzz

I would consider extraction. 

IME, most medical specialists tend to want to apply a gold standard of care for PWD who are terminal without considering gentler options. Much as I'd hate to pull a tooth, he's progressed to a stage where the restorative procedure and aftercare are outside his comfort zone. At stage 6, he may soon be moving onto softer, more easily eaten foods and supplemental drinks as a regular diet. 

HB

King Boo

What Harshedbuzz and JJ said.

While Medicare Advantage provider survey will yield a list of practices that see the elderly, that is not a quality indicator, FYI, so be sure you interview well if you go that route.  Many Advantage Plans are restrictive in services and provider reimbursement;  shortcuts and speed and alternative materials come into play for some discliplines.

Which may not matter that much for an extraction.

I would suggest a consult perhaps with an oral surgeon.  We eventually found a general practice dentist who was a perfectionist  and a realist.  He referred; and the oral surgeon was a great second opinion. Also assessed all other teeth.   Oddly enough, way better than the practice the nursing home referred us to, who was absolutely terrible with the elderly.  My LO was in Stage 5 and quite aware that he was 'talked over' and refused to go back.  Oddly enough, he adored the oral surgeon and couldn't wait to go to the appointments.  Go figure!  Just another odd twist in the journey.  

My LO needed almost a full mouth extraction.  This was my Achilles heal; I can still remember when my Dad told me "my tooth fell out" and hopefully handed me a broken tooth, looking to me for a reassuring solution.  "It's OK Daddy, I'll figure something out and we'll fix it so you can enjoy your food!"   Soothed him.  I about passed out.  

Dental pain is terrible and our LO's poor reporters.  Good luck.

MN Chickadee

You've received some good advice here, I would follow up on some of these options. We have declined dental work since my LO was stage 5. Her partial fell out, but she was already on the slope into swallowing issues so we didn't replace it. She's missing those 3 teeth but didn't seem to care.  Putting her through any procedure would have been far more than she could handle and not worth it. My area does not have any dentists who are specially trained in elderly/dementia as far as I can tell, but there are definitely some that are better than others. Some listen better, some push expensive stuff less, some treat you like an individual. Just like a primary care doctor, you want a dentist who will work with you and jives with your needs and approach. Forcing you to bring a PWD in just to discuss options, during a pandemic and given how hard it can be to get our PWD ready and to an appointment, is a warning flag for me. I would definitely be looking for a new one.

LovingAwareness

Thank you all for taking time to give me advice. I wish I had time to write back to each of you individually, but I am reading and absorbing everything you have said here and considering the options. I feel much better prepared to speak with Dad's current dentist and other providers. We will probably get a second opinion and probably leaning towards extraction at this point. You are all wonderfully kind and helpful.