Updated July 13, 2017
When Nothing Works
In desperation, Joey’s family hired me. They’d been trying to get him diagnosed for three years, but couldn’t convince him to go to the doctor. The arguments had become unbearable.
The wife reasoned with Joey. The son used logic. The daughter painted a happy picture of how great it is to go to the doctor. The adult grandkids used emotional appeals.
They told Joey he needed to go for his own good. They told Joey something wasn’t right and needed to be checked out. That it wouldn’t be as bad as he feared. They told him they loved him and begged him to do it for them. Joey wouldn’t budge.
I got him to go to the doctor on my first try. And he loved me not just after the appointment, but the whole time I worked with him. What magic did I weave with Joey?
No Magic Required
Think getting your parent or partner to an appointment would require magic or a miracle? It doesn’t, but it does take some specific know-how to get someone with dementia to go to the doctor–and still like you by the time it’s over.
I doubt you have time to mess around with trial and error, so I’ll just walk you through it in a way I know works. (No need for you to repeat the mistakes I’ve already made and learned from, right?) I’ve been able to replicate the process hundreds of times, with dozens of different people. It’s as close to magic as it gets.
I’ve broken it down to three main sections: Before, During, and After an appointment. Within those are a total of 29 parts, including three case studies. Like so much else in life that goes well, the bulk of the time is spent in the preparation, or Before, section.
Before An Appointment
Is This Necessary?
It’s seems kind of obvious once it’s spelled out, but it’s an often-overlooked question: is a doctor appointment even necessary?
The answer, like so much else in DementiaLand, is, it depends. Consider the following questions–from kind of obvious to increasingly tricky–to help you make a decision.
Are you observing new symptoms? If so, it’s time for an appointment.
Is an old symptom suddenly worse? Often, care partners think a long-present worsening symptom is simply a natural part of disease progression. The thing to focus on is “suddenly.” Alzheimer’s disease is characterized by a slow, steady decline.
So if something is suddenly different, it’s time to see a doctor. Another way to look at it? Dementia doesn’t exist to the exclusion of all other conditions or diseases–something else could be happening.
Is something just…not quite right? Professionals have specialized knowledge in spades, but we’ll never know your parent or partner like you do. You’re the expert here; if something just doesn’t seem quite right, follow your intuition and seek help.
Does what you’re seeing appear incongruent with other signs? For example, is your parent or partner showing signs of not feeling well, but not a fever? Here’s where it’s important to know that dementia attacks the whole brain, not just memory. The immune system is also affected; people can be quite ill but not spike a fever.
Still not sure? For a symptom-by-symptom list, check out Merck’s When to See a Doctor. The old assisted living maxim is appropriate here: When in doubt, send ’em out.
But What About Preventative Stuff?
Finally, it depends on what type of appointment. Begin with the end in mind when it comes to specialty appointments and testing. I’m not in any way saying people living with dementia deserve anything less in the way of care than anyone else.
What I am saying is they’re typically more medically fragile (depending on where they are in the disease process), and that’s something that deserves consideration. Think carefully about routine mammograms, Pap smears, colonoscopies, and the like.
Case Study: No More Mammograms
Her perception of having labs drawn (a must for a medication she was taking at the time) was she was being punished. She jerked away, yelling, “Ow!” as she slapped at the lab tech. I had no reason to believe a mammogram would go any better.
Additionally, I had to think about what would happen if a mammogram came back with a spot. Would I say yes to a biopsy? What if that came back bad?
Would I say yes to surgery, knowing anesthesia would exacerbate her dementia symptoms? What about post-op recovery? Would I say yes to her going to rehab, knowing an unfamiliar environment would further aggravate her symptoms?
What if she needed chemo and/or radiation? Would I say yes to that, knowing she’d not understand why an IV was hooked up and try to pull it out?
That’s what I mean by beginning with the end in mind. Before you say yes to testing, think about what you’d do if the results don’t come back the way you want.
On the flip side, good news is great. But how would going through the diagnostics add to your parent or partner’s quality of life? What would it change?
How To Choose The “Right” Doctor
Okay, you’ve decided an appointment is in order. Chances are, your parent or partner hasn’t been to a doctor in quite some time. You may be a little anxious about how long it’s been. Consequently, you may be feeling some internal pressure to get it right, thinking this is your one shot.
If you overthink this part, you’ll quickly get stuck in action paralysis..
Most folks thinks a geriatrician is the way to go, and it is the most frequently-sought specialty. Also, you’ll probably have better luck finding a unicorn. Feel free to Google your area, but don’t be discouraged.
Next in popularity are internists, blessedly more bountiful. Primary care physicians, general practitioners, physicians’ assistants, and nurse practitioners are also very good choices.
Getting an accurate diagnosis (if you haven’t yet) is also important, and this is where neuropsychologists and neurologists come in handy. But if you’re in a situation where your parent or partner hasn’t been to a doctor in some time, start with a PCP or similar first.
A PCP can take a look at the big picture, address a host of potential concerns, and make necessary recommendations and referrals.
The main thing is to get an appointment, not get sucked into a research project. Ask friends who’ve been down this path for recommendations.
Making The Appointment
Here’s the first trick in getting someone with dementia to go to the doctor: just make the appointment! Our natural tendency is to get our loved one to agree this is necessary, before we take action. (This is also why you’re trying to manage a near-crisis right now, right?)
Trying to get to agreement can quickly turn into an argument. Rather than going down that no-win path, just make the appointment. Set yourself (and your loved one) up for success by asking for a later-in-the-day appointment. Unless your parent or partner is an early riser and still able to get through a morning grooming/hygiene routine at a fairly decent clip, a “let’s beat the crowd” appointment time just isn’t worth it.
When you call the office, explain the situation. Ask for appropriate accommodation. And make sure everyone in the office gets it. Remember, the doctor works for you!
Ask for the provider’s email so you can detail any concerns you have prior to the appointment. This eliminates the need to attempt an awkward pull-aside during the appointment, when it’s probably too late anyway.
Standard reminder: make sure the provider takes your parent or partner’s insurance. Because both Medicare and Medicaid have managed plans, make sure you specify the name of the insurance exactly as it appears on the card.
Um, isn’t that *sneaky*?!
To any reader aghast I would suggest just making the appointment without first getting buy-in or enduring negotiations akin to Middle East peace talks: I know it feels unnatural that as the partner, you’re not treating your spouse as an equal. And that as the adult child, it feels like you’re parenting your parent.
I’m sorry you’re going through this. It isn’t fair, and it definitely sucks. Also, it’s now your responsibility to see to it that this person you love is getting the care he or she needs.
Your parent or partner’s whole brain is under attack, not just the memory part. Reason, logic, decision-making, insight, and judgment are all affected. (Over 40% of people in the early stages also have anosognosia, meaning their brain is telling them everything is hunky-dory. As the disease progresses, it’s closer to 80%.)
Let kindness be your guide. As my friend, grief therapist Georgena Eggleston, advises, “Ask yourself, ‘What’s the kindest, most loving thing I can do in this moment?’ and then do it!” (Okay, Georgena says you should ask that of and for yourself. I’m saying let it be your guide with your parent or partner.)
The kindest thing isn’t getting into an argument, or asking a person who can no longer access reason and logic to use it.
Preparing for The Appointment
Congratulations, you made the appointment! Now, you need to devise a plan for appointment day.
You’re probably a combination of relieved and anxious as you set about developing a plan. You’re likely imagining all the problems this doctor appointment will solve. You may be thinking of it as a game-changer.
As you’re subconsciously pinning all your hopes and dreams on this one appointment, let me be the party-pooper who brings you back down to earth. You’re better served–as is your parent or partner–by keeping your expectations low enough you can’t trip over them.
Sounds pessimistic, sure. That, and it helps avoid an emotional rollercoaster of unrealistic expectations and bad outcomes later. So, devise a great plan. Work your plan to the best of your ability. Just don’t plan your results.
One of the questions I’m asked most frequently is “When should I tell her about the appointment?” (I can feel your anxiety ratcheting up from over here on the other side of the screen.)
Keeping in mind people living with dementia typically experience higher than usual levels of anxiety, and are losing their ability to self-soothe, answer this: When does your parent or partner need to know this information?
What good thing will come out of revealing the appointment right now?
The flip side is, How often do you want to answer questions about it? Because once you do the big reveal, you’ve also committed yourself to patiently and cheerfully answering the same questions about it, however many times your person asks them.
Your parent or partner has difficulty remembering on a good day. Anxiety makes it more difficult to recall information (for anyone, cognitively impaired or not).
People living with dementia often forget what they’ve previously agreed to, or plans they’ve made. Due to both anxiety and forgetfulness, I recommend going with same-day notification.
Creating your plan
This is how to get someone with dementia to go to the doctor: just ‘slip’ the appointment into the flow of the day. ONE THING → APPOINTMENT → TREAT is a good model to follow.
Please note, the model is one thing. I know it’s tempting to jam as much into the day as you possibly can. And especially if the appointment goes well, what’s a few more things afterward?
The difference between a positive experience and seriously crappy one, is what.
Dementia being about so much more than memory loss, it’s easy to lose sight of the fact that people just don’t have the same energy reserves we do, or that they used to. The last thing you want to do, though, is let someone who’s losing the ability to self-soothe get over-tired.
Know in advance what the one thing is you’ll do before the appointment. It could be a quick errand, or it could be “taking a ride” that ends up at the doctor’s office.
Why a treat? Because although your parent or partner later may not recall exactly what happened that time they went for a ride with you, they’ll have a feeling about what happened. And you want it to be a positive one. So end the day on an up note.
And definitely know what the treat is after the appointment. You may feel nervous or stressed on appointment day, making it harder to come up with a good idea on the fly.
Case Study: "We went for a Cinnabon!"
I hadn’t known Joey very long. What did he love? What was important to him? What was his favorite treat? I asked his family for clues.
They gave me a cheat-sheet: Joey loved to talk; go for scenic drives; tell stories; play dominoes; was proud he’d owned a small business; and he especially loved coffee and a Cinnabon (but his wife wouldn’t let him indulge his sweet tooth).
Armed with all that, I made the neurology appointment. On the day of the appointment, I went to Joey’s house. When he opened the door, I told him how happy I was to see him.
I told him I’d heard his was really good at dominoes, but I didn’t know how to play. Would he teach me? He didn’t remember the rules; I rolled with it and kept playing. When the game was finished, I asked if he’d like to go for a ride.
Going for A Ride
His wife helped him with his shoes and jacket. I assisted him into the car and clicking in his seat belt. I listened attentively as he pointed out places in his neighborhood he loved. I asked him questions about landmarks we passed on the way to the doctor appointment.
As I pulled into a parking spot, I suggested we get out and stretch our legs. I pointed out to Joey the exotic fish in the aquarium as I checked him in at reception. We stood in front of the aquarium for several minutes.
“Joey?” the nurse called. I suggested we find out what that was all about. As the nurse asked him to push up his sleeve so she could take his blood pressure, I remarked what a nice service that was, the lady taking blood pressures. Joey agreed.
I asked Joey if he’d ever had a problem with his blood pressure, all the years he’d been a small business owner and the stress that came with that. We had a lovely chat about his entrepreneurial endeavors.
The doctor walked in and asked a bunch of questions. He didn’t have much in the way of bedside manner, but was able to make a diagnosis. After the doctor left, Joey told me he thought the guy was kind of a jerk. I agreed and suggested we get out of there.
The Cinnabon Lady
On our way back, we just “happened” to drive up to a Cinnabon, Joey’s favorite treat ever. We had Cinnabons and coffee and shot the breeze for about 20 minutes. Then we drove the 10 minutes back to his house.
Joey’s wife, fearing the worst after so many bad experiences, casually threw out, "So, how'd it go?" as we walked through the door.
Joey said, “I know I shouldn’t have, I know you don’t want me to, but we went for a Cinnabon!” His wife, in shock at his response, said it would probably be okay, this once.
That’s how I became known as the Cinnabon lady. He didn’t know my name, but he knew he liked me. And Joey never once mentioned the doctor appointment, not to me or anyone in his family. It just wasn’t important. It was all about the Cinnabon and coffee, the positive experience.
Getting To The Appointment
Check your mindset
The main “trick” to get someone with dementia to go to the doctor (or anything else) is to make a conscious decision you’ll bring respect, kindness, and love into every interaction.
Next, concentrate on staying calm. You don’t yet know the outcome; it could go smoothly, or it might not, but either way, staying calm is going to be the most helpful thing for everyone involved.
Get your parent/partner ready
However long it takes you to get ready, double that number and tack on an extra 15 minutes. Throw on an extra 15 for unforeseen circumstances. Now you’re in the ballpark.
Rather than being left to their own devices, most people need cueing and reminders to successfully get through the morning routine. For a detailed example sequence on how to do that, see Potty Talk: Successfully Navigating The Bathroom.
Just do the next indicated thing
Although it sounds reasonable to us to say, “It’s time to get ready,” it’s likely too vague for a cognitively impaired person. Instead, focus only on the next indicated thing that needs to happen.
“I need you to put on your shoes now,” is concrete and specific. Still, depending on where your parent or partner is in the disease process, you may need to back up a step and start with, “I need you to sit down now,” before moving on to putting on shoes.
Most care partners are anxious at the thought of making it out the door. They worry about their parent or partner’s reaction to finding out a doctor appointment is on deck. I suggest a simple, “Let’s go for a ride.” What comes after that? I’ll give you several ideas in the “Do what works” section below.
Energy is contagious, so if you’re feeling anxious, it will catch. Instead, stay focused only on whatever the next indicated thing is–not the thing after the next thing. Stay present in this moment to keep your own anxiety at bay.
Adopt the mindset that no matter what happens, arguing won’t be part of it. Just like you wouldn’t dream of kicking your dog, it’s the same with arguing. Just not going to happen. This reduces any anxiety an argument might erupt; now you know for a fact it won’t. (Remember, it takes at least two people to have an argument.)
Grab the go bag
Doctors sometimes run late. Things that don’t usually happen can. Be prepared by taking a go bag with you. If you’re out and about with your parent or partner frequently, it’s a good idea to have one in your vehicle at all times. Just make sure you swap out any unused perishable food. A useful go bag includes:
- Disposable briefs (at least 2)
- Moisture barrier cream
- Box of disposable gloves
- A complete change of clothes
- Socks and shoes
- Plastic bags/Hefty bag for soiled clothes
- Protein-based snacks, or at least something other than only candy bars
- Food and water for you too
- Magazines, puzzles, tablet (& charger!), any other items that would engage your parent or partner
- Your parent or partner’s wallet with ID and insurance cards and copay, if they don’t carry those items themselves
Case Study: That Time I Didn't Bring A Go Bag
As a care manager, my job includes helping families create a plan for both right now and the future, teaching them specific techniques for dementia symptom management, advocating for clients during appointments, and many other things--but not direct, personal care.
My client Henry and I were waiting for his appointment in the large, bustling medical center when he suddenly needed to use the restroom. I helped him stand up and use his walker to get to the restroom. He said he had it from there.
From Bad To Worse
I stood outside the door and waited. I listened to my voicemail. Other men came and went. I checked my email. Just as I was starting to get a little edgy, a man exited the restroom and asked if I was with Henry. When I said I was, he said, “That guy needs some help!” and took off.
Turns out, Henry hadn’t made it into the stall in time. He thought he could handle the result himself, but the situation had gone from bad to worse as he inadvertently soiled everything he touched.
Because I didn’t do--had never done--direct care, a go bag hadn’t even occurred to me. I helped Henry clean up as best I could, using every last paper towel the restroom had to offer.
Why To Stock Certain Items
Blessedly, we were in a large medical center with abundant resources. I was able to get assistance from staff to get Henry changed out of his soiled clothes into a hospital johnny and moved out of the restroom with his dignity intact. They helped him shower and change into a fresh johnny while I ran back to his nearby apartment to get a change of clothes.
He needed pants, obviously. Also a fresh shirt, because his shirttail had been in the wrong place at the wrong time. Likewise, his undershirt and belt. And fresh socks and shoes, because gravity.
That was the last time I ever went anywhere with a client without a fully stocked go bag.
Henry, bless him, is also the guy who taught me bald heads burn quickly when waiting for the car to come around, so bring a hat--and sunglasses, while you’re at it.
And by the way, Henry had only very mild cognitive impairment. Accidents can happen to anyone.
If your parent or partner is able to easily transfer in and out of your vehicle, great. Make sure there’s enough space for stowing a walker or wheelchair, grab the handicapped parking placard, and go.
Alternatively, you can use specialty transportation. It’s especially useful if your body screams every time you wrestle a wheelchair into the backseat of your two-door car or need to assist with transfers in and out of your low-slung ride.
You have several options. Google “handi ride” + “[your city]” to find specialty public transportation service in your area. Although the plain old city bus can accommodate wheelchair users, it’s not guaranteed to have a spot available when you need it. Or any seat at all.
The handi ride option is typically about $3 round-trip, offers door-to-door service, and you (or another helper) can usually ride free. This saved my mom’s back when my grandma couldn’t transfer in and out of her wheelchair anymore.
The process to sign up for service varies by area, but often requires various medical documents, so check into it as soon as possible if you think you’ll need this option in the future.
Google “non medical transportation” + “[your city]” for another option. This is much spendier (~$80 R/T), but insurance may cover it. Signing on for service is typically much quicker.
For what’s basically Lyft with concierge service, check out GoGoGrandparent. They’ve thought of everything–specify special requirements when you sign up and get text alerts at pick up and drop off–and their customer service is top-notch. That said, carefully consider where your parent or partner is in the disease process before choosing this option; you don’t want them terrified they’re in a car with a stranger.
Yet another lesson I’ve learned the hard way is to apply for a handicapped placard in a timely manner. Most medical offices make it easy to drop off folks right outside the front door…but there’s not a monitor to make sure your person is safe while you head to the back 40 to park the car.
If you don’t have a placard yet, using alternative transportation may be your best bet. Unless your medical facility has valet parking, in which case, hey now!
Do what works
The basic premise for getting to the appointment is to slide it into the flow of the day: ONE THING → APPOINTMENT → TREAT. That said, you’re the expert on your parent or partner. Use your ‘insider’ knowledge to pick the scenario most likely to work.
Also consider the possibility an explanation may not be necessary. As with the story I shared about Joey, the topic just never came up. You’d be surprised how often that’s the case. People are either far enough along in the disease process it doesn’t really phase them, or early enough that they front, thinking they forgot something they should’ve remembered.
Medication refill: If (and only if) your loved one’s in agreement that she needs her medication, this is the reason for the appointment. “The doctor won’t give you a refill until she sees you with her own eyes,” or, “The doctor won’t give a refill until he takes your blood pressure to make sure you still need the medicine.”
Acknowledged memory problems: If she believes she has memory problems, this is the reason for the appointment: “I read/saw/heard/was told recently that low thyroid level/vitamin deficiency/depression can cause memory problems.” (By the way, that’s true.)
Caveat: Acknowledged memory problems are relatively rare, and likely fleeting. Don’t get sucked into an argument.
Denied memory problems: If she believes the diagnosis was incorrect or the previous doctor was a doofus, this is how to get someone with dementia to go to the doctor: “I know how unhappy you were with Dr. Dippy, so this appointment is for a fresh set of eyes/second opinion.”
Waiting list: As you just ‘happen’ to be driving by the office, you say, “This is the new doctor/specialist I heard/was told about! The waiting list is six months just to get in because she’s so good. We’re right here, let’s run in right quick and get on the waitlist now since it takes so long.” Imagine your shock and surprise when they have a ‘cancellation’ and take you back to an exam room!
Your own appointment: Bring your parent with you to ‘your’ appointment, and praise the doctor for being so kind as to take a look at your mom, too, since she’s there.
At The Appointment
If you’ve been struggling to get your loved one to a doctor for a while now, you’ll probably have a long list of concerns. As much as you’re excited and relieved the appointment is finally happening, the doctor won’t have time to address everything in one appointment.
During check-in at the reception desk–this advice is straight from a doctor–slip the gal at the desk an index card with your top 1-3 concerns, concisely stated. Think “sundowning type behavior” versus “Every afternoon when I’m trying to feed the dog, he starts getting really anxious and then…”
This is yet one more way the go bag is handy. Pull out an activity and keep your parent or partner’s mind active and engaged, rather than presenting an opportunity for the imagination to step in and run wild about what’s going to happen next.
If conversation is engaging enough, go with that. Whatever the case, this isn’t the ideal time for you to check Twitter.
During The Appointment
Staying focused during the appointment may be the biggest challenge of the day for you. Particularly if you’ve been trying to make this happen for awhile now, you may be tempted to just start blurting every last concern you have.
I strongly recommend using the doctor appointment template in Talking To Professionals: An Insiders’ Guide instead. It will resolve not only the blurt problem, but walk you through everything that needs to be covered before you leave.
You may end up needing to do some on-the-spot education as well, if the doctor tries to talk only to you instead of your parent or partner. The best practice is to speak directly to the patient (no matter what stage of the disease process) and then ask the care partner if there’s anything they’d like to add.
After The Appointment
Congratulations, rock star! You did it! It’s tempting to let your guard down, after what you just pulled off. But you’ve got a few more things to go before you’re done
Be A Team Player
To the extent people are able to make new memories, here’s how it works: the more emotional the situation, the likelier it turns into a memory. Just like with the rest of us.
So, if your parent or partner happens to be really steamed about the doctor appointment, should you argue? (You’re shouting “NO!!!” right?) Be a team player–on your parent or partner’s team. Listen. Validate. Empathize. Rinse. Repeat. Forever and ever, amen.
Don’t Wear A Target On Your Back
Always, always, always throw the doctor under the bus when it comes to anything your loved one doesn’t agree with or like. It’s always the doctor’s fault!
You’re not the jerk who said Dad can’t drive anymore. You’re not the meanie who said Mom has to use a walker at all times. You’re not the one insisting your beloved partner take that medication he hates. No, siree, it’s the doctor. It’s always the doctor’s fault.
Agree with your loved one–listen, empathize, validate. It sounds like this: “Yeah, I can tell how pissed you are! I’d be too, if that happened to me. I feel terrible for you! I love you so much, I hate seeing you so upset….”
Note there’s a difference between what I just described and agreeing or capitulating. It’s not saying, “Fine, you think you can drive, go right ahead! Don’t call me to come bail you out!”
Also, don’t make her feelings wrong; don’t try to use ‘reason & logic’ so she’ll see the errors in her thinking. She won’t, but she’ll be plenty ticked at you.
Don’t believe me? Try saying, “Oh, you don’t mean that!” or, “That’s not very nice!” when your loved one is teed up about the doctor saying they can’t drive anymore, or some other piece of news they don’t like. You might as well throw yourself in front of a freight train. It’s quicker and less painful.
Labs are often ordered during the visit, but that doesn’t mean they have to be done right after. Use your best judgment here (remembering good judgment is the result of experience, which is gained from bad judgment). If it’s lunch time, probably better to just go get lunch. Unless they’re STAT labs (in which case a tech would’ve shown up in the exam room), go another day.
You know what’s even better than a drive-thru pharmacy? One that delivers! Whichever way works for your situation, remember both options before innocently thinking, “Oh, we’ll just get it now because we’re already here,” and either exacerbating a bad experience, or blowing up a perfectly lovely day.
Again, if it’s an emergency, you won’t be asked to wait around in the pharmacy. And if you need it quickly because your parent or partner is feeling ill, hanging out in the pharmacy is the wrong place for them anyway.
This part is non-negotiable! You want to do something really pleasurable after the appointment so the experience is associated with as much good stuff as possible. It might be a really decadent dessert, going to the park to feed the ducks, a visit with the grandkids.
Whatever it is that truly rings your loved one’s bell, do that thing. If you can see your parent or partner is exhausted, consider heading home for a battery recharge. Pick up where you left off after a nap. Remember, you want to end the experience on a positive note.
Boom! You just did something scary that caused you all kinds of anxiety. But you did it! Now you can let your guard down.
You deserve a treat too. (Yeah, but what about your partner? Respite care! That can be with family, with an in-home care provider, or at a day program.)
Head out for a mani-pedi, trip to an actual brick-and-mortar bookstore, a coffee date, round of golf, whatever. Do not skip this step. You earned it!
So. That’s how to get someone with dementia to go to the doctor. Can you do that? Yes. Yes, you can!
Now you know my ideas on how to get someone with dementia to go to the doctor, but I want to hear yours. What’s worked for you? Please post your experiences (and help newbies!) in the comments.
CChristy Turner is the founder of DementiaSherpa.com and has enjoyed the privilege of working with 1,123 people living with dementia and their families. Follow on Facebook, Google+, Instagram, Pinterest, Twitter, and YouTube. Content varies across platforms.