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Dementia Care: How to set the stage for a smooth experience at a medical appointment

Updated: Jan 27, 2020

Template included to utilize for any doctor appointments.

I have been taking Dad to his doctor and dental visits and noticed that things sometimes cause a lot of angst and agitation to Dad. Common challenges include the staff speaking too quickly, too softly, speaking a bit 'mumbly' or unclear, not looking directly at Dad, not waiting for Dad to finish answering. When Dad starts repeating himself, they suddenly understand about dementia and him not having short-term memory, and the result is they stop talking to dad and then only look/talk with me (or the aide). When this happens, Dad is completely aware that people 'cut him off', didn't listen, are not 'talking to him' and he is insulted (rightly so) and feels they don't care and he gets angry and frustrated. Once he is in this frame of mind, it can last throughout the rest of the day and sometimes the next day if I can't find a way to swing his mood back to the positive. He gets very upset also if he ends up too cold or has to wait too long. We literally waited 45 minutes in the waiting room PLUS 1 hour in the exam room before we saw a doctor once. I completely understood the situation, Dad had an acute issue and that the doctor 'squeezed' us in on a same day appointment so she could quickly take care of us; it was worth the wait. Dad didn't think he was sick, didn't know why he was there, and was just upset at the rude doctor for making us wait too long. He got quite loud and verbal about it: just yelling away in the exam room at how rude the doctor was, that the office shouldn't schedule appointments so close together if they couldn't stay on time, etc. I'm 100% sure everyone in the office heard him, both staff and patients. I did all I could to keep him occupied. I chatted about different things, I asked him questions. I brought with me a drink, a magazine, an activity/puzzle book and I offered them up and tried to engage him with those things. I finally called my brother and put him on speaker phone so he could chat with Dad --that worked ! Brother wanted to be on the phone to be a part of the doctor visit anyway so this worked perfectly. Dad then lectured the PA who came in first to ask a bunch of questions. Dad didn't know the answers (or answered falsely) -so I began to answer. Dad got mad because the PA was looking/talking to me not him. Dad spoke loudly "G*d*D*m I can answer questions about me!." If he wasn't already so frustrated and mad (and didn't feel good!)--this might have gone smoother!

Another bad experience with a particular physician. He consistently enters the exam room, doesn't make eye contact or say anything. The doctor goes directly to his computer, types in it while looking at the screen. Then while still looking at the screen, he mumbles quietly some questions as he confirms some information. Dad looks at me, I look at doctor. I say to the Dr. "Dad cannot hear you, can we sit closer or can you talk louder?" This was something I had to repeat multiple times --this doctor is just very soft-spoken. It just is not a good match and my options are deal with it, or find another doctor for this specialty.

I am committed to making things go smoothly for dad and try to prepare things so he doesn't get irritated, disrespected or mad. Most of the doctors and their staff and absolutely wonderful, over the top kind, caring, helping and are trying to do their best. Dad loves chatting, joking and engaging with them. However, they are not always understanding of dementia challenges or knowledgeable of what techniques might work better for engaging with Dad, and they never have enough time! In addition, I'm not always able to attend the visit with Dad, so I have to rely on my hired companion to do the driving/accompanying. Sometimes this means the doctor is asking the aide questions about Dad that she doesn't really have the information to answer. To address this, I came up with a letter to help everyone be on the same page and have the best experience. I use the letter (Page 2 & 3) with slight adjustments when I accompany Dad too. Page 3 the doctor can keep in his files. Page 2: I made it shorter leaving off the top part, and make it more simple. I am there to constantly coach the participants, so the letter is very basic. I include the letter because often I am trying to communicate to the Doctor things I do not wish to have to state out loud in front of my Dad. (My Dad doesn't 'know' he has dementia so the things I say might insult or hurt his feelings, which is something I am trying to avoid). It helps the Doctor too as he can review it before he comes into the room, and he is prepared in advance (hopefully) now that he has this information.

One example of a challenge with doctor visits is around communication/speaking to Dad. He is hard of hearing, his eyesight is not the best. My wonderful smart and intelligent Dad now has trouble following conversations, understanding the topic, and keeping up with the pace. He also is unable to answer any questions accurately. His answers are accurate based on what his brain 'thinks' the answers should be but unfortunately his answers are not based on reality.

Here is how that communication challenge manifests itself at EVERY medical appointment: When we check in at a medical front desk, everything is fine. I field questions, I include Dad, everyone smiles. Then at some point, someone will stand at the door, call his name, wait for us to come to them, and says "Follow me" . The person turns around, start walking (quickly) and continues talking. All perfectly understandable; but Dad's pace is slower than they are accustomed to (they usually have to come back for us) and neither of us hear a thing that person walking is saying, since they TURNED AWAY and walked away in a noisy /bustling office. Dad is busy being focused on walking straight, going down the proper hallway, and not falling down. I'm focused on being near dad, but not too near; helping dad, but not helping 'too much' and keeping one eye on where that person went (YOIKS, talk about egg-shells!). All perfectly understandable, and hard to change. But I am attempting to improve things by providing a letter to the doctor.

Dad has a regular visit coming up at the end of the month, and I cannot participate with him. So today, I prepared a 3 page document to pave the way. I got a colored plastic sleeve to put it all in, and put a bright colored post-it note on front with the date.

  • Page 1 Companion letter/info

  • Page 2 Letter to the Doctor

  • Page 3 Medical Information 1-sheet listing

Format / Contents of pages:

Page 1 Companion letter/info: I try to include everything to help her and eliminate any questions she may have! Important to ensure dad is up at the right time in order to eat a decent breakfast, and not be rushed! I state the doctor's name, address, phone, reason for visit, date and time of visit, any paperwork they should bring, anything that should be said when checking in or out. I always specify how long I think it takes to travel from home to office, and ask her to be there 15 minutes ahead of the appointment. I thank her for her help and mention that I appreciate her insights and summary of the visit once they return home.

Page 3 Medical Information 1-sheet listing

(a) Dads Daily Medicine,

(b) a very short bullet list of medical things from 2019

(c) List of Dad's MEDICAL TEAM (Name/Specialty/Town)

Page 2 Letter to the Doctor

TOP PART: The 'facts' of the visit, same as page 1. The COMMUNICATION TIPS (shown below).

TEMPLATE FOR Page 2 Letter to the Doctor:

Dear Dr. XYZ and Staff,

My Dad, NAME HERE is a wonderful gentleman of xx years. He is going on three years of living with Dementia/Alzheimer’s. Here are some requests/tips of working with him to help you both have a great experience with good outcome.

1. Please SMILE - he really is in tune to emotions, a smile keeps this positive!

2. Communication: TALK DIRECTLY TO DAD –not xxxx(name of aide) Rest assured she is listening and will chime in to help whether you look at her or not.

a. Look him in the eyes (if you turn your head away, he can’t hear you as well or at all, and doesn’t know you are speaking to him)

b. State your message CLEARLY –simple words and sentences.

c. Speak slowly and distinctly with good volume -- enunciate carefully (we are all used to a much faster pace of life, but he can't keep up)

d. If he says “I can’t understand’ - then step#2 repeat it with same wording –a bit slower. If he still doesn’t understand –Step#3: rephrase it more simply if possible. Step#4 If it still doesn’t work, just smile and say OK all good, and move on.

3. PLEASE BE PATIENT - his brain only allows him a pace that is much slower than the rest of us currently live our lives.

MEDICAL INFORMATION - Dad will NOT be able to accurately self-report on his own condition, therefore, if you have any questions where the ANSWER IS IMPORTANT AND WILL DETERMINE MEDICAL DECISIONS/MEDICATION DECISIONS -- listen kindly to him, but don’t take his answers as ‘gospel’. –ask xxx, his nice companion, or put it on the list to ask me when you call.

I thank you for all you do to make this a valuable visit to assess his medical condition and also a good experience for Dad.

Warmly, RoseAnne Homola

I hope this helps the companion and the doctor by making it easy for them to understand Dad and his needs and also helps Dad have a great experience. If you like it, feel free to copy my template and make it your own.


FOOTNOTE: Explanation of ADL's

Medical Definition of ADLs (activities of daily living)

ADLs (activities of daily living): The things we normally do in daily living including any daily activity we perform for self-care such as feeding ourselves, bathing, dressing, grooming, work, homemaking, and leisure. important and can change subtly as time goes on.

Instrumental activities of daily living (IADLs) are somewhat more complex but nevertheless also reflect on a person’s ability to live independently and thrive

It is important to understand these categories and assessment of them, in order to care for your loved one well, help determine level of care needed, and determine when benefits might be received through outside programs such as Medicare, Long-Term Health Insurance.

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