Composition of the care team?

SteveOD

I'm looking for advice on the appropriate composition of a care team for my wife, who at age 70 is in the early stages of dementia. A year and a half ago (in another city), a geriatrician send her for blood tests (after which my wife started taking B12) and an MRI (to rule out physical causes for the memory loss). In a new city for a little over a year now, my wife sees a general practitioner (who sent my wife to see a neurologist, but who never asks my wife about her memory issues), the neurologist (who had my wife undergo a neuropsychological evaluation which formed the basis of the diagnosis of dementia, and who started my wife on donepezil, but who hasn't spoken to my wife in 3/4 of a year), and a gynecologist. My wife asked to talk to someone about the waves of depression she's experiencing, but when my wife arrived for that appointment, the social worker she was to see told my wife it would not be possible to see her until my wife could show proof of a clean COVID-19 test (but who did not arrange for the test at this supposedly comprehensive medical facility). 

My wife feels (and I agree) that she is not getting the attention or coordination of care she deserves from this team (I use the term very loosely). It's bad enough to face the uncertainty of her dementia diagnosis without feeling that your doctors aren't really looking out for you. Fortunately, we live in a city large enough to have a number of other medical enterprises, including a good university medical system. I'd appreciate opinions about who we should reach out to first—a general practitioner? a gerontologist?—and who we should expect will be on the team of doctors who see to her care.

JoseyWales

It's been my sad experience that there's no such thing as a "team" of doctors. We now just rely on DH's PCP.  I don't think we'll ever go back to the neurologist. I'm pretty much the one that tells any doctor what the "other" doctors have to say.

LadyTexan

Good morning Steve.

For context, my husband started showing symptoms in 2016. He was diagnosed in 2019. His diagnosis is early onset Alzheimer's disease. 

Our care team has morphed over time. In the beginning we had several bad experiences trying to be seen and be heard by the appropriate professionals. We switched from one large health system to another. It made a giant difference for us.

Our team has always included a primary care physician. 

When we were on the road to diagnosis our providers included a plethora of people:

• Primary Care Physician - ordered lab work, made referrals, explored vitamin deficiency and depression, recommended complete abstinence of alcohol.
• Intensive outpatient program for alcohol abuse - my husband was drinking abusively. Wernecke-Korsakoff syndrome was suspected by the PCP.
• Neurologist - to pursue the diagnosis, order MRI, attempt the lumbar puncture (spinal tap)
• Psychiatrist - to perform the Neuro-psych testing

After diagnosis:

• Primary Care Physician - prescribes meds and is our frontline contact
• Social worker & counselor - provides talk therapy for me and helps me manage stress. The counselor offered counselling to DH but he declined.
• Geriatric Psychiatrist - evaluates DH's behaviors, anxiety, and depression. Prescribes psychiatric meds.
• Support group - I can't survive this journey without support. The support group is not connected to the medical center in any way, but it is an important component of my survival.

On the road to diagnosis we were VERY fortunate to connect with the Comprehensive Memory Center at UT Health in Austin. Prior to that, our care (at a large healthcare system in Temple) was disjointed and extremely frustrating. 

During our journey, I have learned to be an assertive squeaky wheel for DH. I frequently use the patient portal to communicate with the health care team. I also attend all of DH's appointments. I prepare an agenda prior to all appointments that include recent changes in DH, current issues, meds and more. I believe my participation and advocacy helps DH get the care and attention he needs.

Jo C.

Lady Texan has been very thorough.   I would add that when one reaches a certain age or has complex medical issues, it is best to have one's primary physician be one who is Board Certified in Internal Medicine.

Neurology is best at diagnosing which specific dementia is present. There are many different dementias of which Alzheimer's Disease is only one.   This is of utmost importance as meds for one type of dementia may be contraindicated in another and may even make things worse.  Sometimes the diagnosis for dementia type will change as the disease progresses; that is not unusual.

MRIs very often do not show much. SPECT Scans are sometimes done which can detect more.

When very early on in our Loved One's (LOs) journey, seeking help from a counselor can be helpful, but as the disease becomes more entrenched, talk therapy is no longer helpful for our LO.  However, it IS helpful for the caregiver.

When one has a very disengaged physician who is not communicating nor caring and missing much, then it may be best to have a dialogue with the physician about the concerns, or to make a change to a different one.

Patient portals can indeed give one the ability to provide input, etc.; however, that can come with some frustration too if it is not addressed in a timely manner or addressed well.  Also, all such communications become a permanent part of the medical record and can also be used should a legal case arise; therefore, how one documents can be important.

As a caregiver, when my LO no longer communicated well, or thoroughly and especially when not accurate which was unintentional, I would write a detailed and succinct memo outlining all the changes in cognition, function, behavior and any problems and get it faxed or otherwise provided to the physician's office several days prior to the scheduled appointment. I contacted responsible staff and let them know it was coming and was time sensitive to an appt. of such and such a date and to please get it to the doctor that day.  I also carried a copy of that memo with me at appts, just in case the physician had missed it.  I would excuse myself from my LO to "use the bathroom," and then asked staff to check with the doctor to find out if he/she had read the memo.  If so, good.  If not, I could provide the copy.

By doing the memo, I did not have to speak about my LO in front of her which would have been a disaster; and it maintained a semblance of dignity for her as much as possible.

I never had my LO go to an appt alone. I was always there, sometimes our LO does not always communicate well or accurately and also on the reverse side of the coin, does not always recall or interpret the physician's input well. Best by far to be at all appts. even if our LO is high functioning.  The point at which this starts to happen can be subtle and not easily seen, so best to be there too.

Always bring all the meds with you so the MD can see them and not miss anything as they may or may not relate to any problem issues.  Good idea to Google each med and find out not only their purpose, but what potential side effects there may be.  May not have any issue, but knowledge serves us best in the long haul.

Do homework on Google before appts as appropriate. so one can work from a potential knowledge base for better communication.

Communication:  Never wait for the doctor to be the one to reach out.   It is so often up to us to raise issues, to ask questions, to request referrals, and for us to bring up issues such as memory, behavior, cognitive issues, declining function, medication issues, etc., etc.  Do not wait for the physician to do this; even the best ones have uber busy days and much on their minds in many ways and things can get missed .

AND . . . never, ever let the physician "assume" things for the already present existing issues  - he/she needs to do the exam and the labs or other workup to accurately know what is present and to monitor the process. 

AND . . . on the same framework, never, ever let physicians "assume" that all new symptoms or difficulties are being caused by dementia. The bodies of our LOs have just as many systems in their bodies as we do. Not everything is going to be caused by dementia, so to have best outcomes and not confound and complicate matters, all other causes for symptoms should be ruled out first before ascribing them to dementia.

I feel that having a good Board Certified Internal Medicine physician is important; if you would prefer a Board Certified Geriatrician that would also work.  For us, the Geriatrician we had access to was not exactly a "cutting edge" physician and he also tended to "assume" far too much.  We changed to a good Internal Medicine MD who was excellent and that really helped.   Each person's situation will be different.

We also had an excellent Neurologist who saw dementia patients as a routine part of his practice; that is important.  He was excellent, connected, and cared.  We were three separate times referred to Geriatric Psychiatrists (three different ones) when we had the Geriatrician.  Each of the times, it was a miserable sort of big nothing.   Meds were prescribed that were worthless for what was happening; talk therapy was a thing of the past and there was no real tangible assistance.  The Neurologist we finally got to made all the difference in the world; especially with prescribing and formatting a good plan of care.

NOTE:  Our Board Certified Geriatrician misdiagnosed my LO with Alzheimer's  Disease; meds were presribed, but things kept going downhill.  I finally made an appt. with an excellent Neurologist who did a detailed exam, labs and a SPECT Scan; my LO actually had FrontoTemporal Dementia and was on contraindicated meds that had to be discontinued which made a difference almost immediately.

That all being said, we too must be part of all of those bits and pieces.  The carer really needs to attend appointments.  We must be giving input, asking questions, not letting matters get slid by.  Being part of the healthcare team includes us too.

As things begin to evolve with our LOs, it at first can be subtle and it feels as though something is wrong with the medical care team; however, many of us learn the hard way that the sub rosa changes were actually the driver of the misses and blips.

As said, each of our LOs are different, each of us caregivers are different, so what works for one may not be what works for another; but hopefully some of the input will be helpful.

Do let us now how things are going; we are all here in support of one another and that now includes you too!

J.

Jo C.

As for the question about seeing a gynecologist; if you look this up on Google, you will find find that if a woman has negative Pap smears, then after age 65, it is considered okay to stop having them.  However, if a woman has other problems such as dryness or other issues., she may benefit from seeing her gynecologist even if a pelvic is not done.

As for mammograms. The literature indicates that after age 75, a woman no longer needs the annual or every two years mammogram.  That can be a bit controversial when simply using age as the only issue.

However; all of that being said, it is best to ask your wife's physician's letting them know that she has dementia and ask if, in her medical history and condition, whether or not continuing such exams has value.  

Once again, everyone and their condition, history, and family medical history is different.  Most of us, when our female LOs reach a certain point in their dementia, pelvic exams and mammograms are no longer done nor would our LO be able to cooperate with such an exam or even tolerate it.

J.

dayn2nite2

SteveOD wrote:

My wife asked to talk to someone about the waves of depression she's experiencing, but when my wife arrived for that appointment, the social worker she was to see told my wife it would not be possible to see her until my wife could show proof of a clean COVID-19 test (but who did not arrange for the test at this supposedly comprehensive medical facility). 

This part confused me.  Who made the appointment for her and was she not told before the appointment that proof of test or vaccination was needed?

The person seeing her is not going to arrange for testing beforehand.  That is your responsibility (sadly, if she is making her own appointments she may have been told about testing and forgot?).  Most providers of any care are requiring vaccine proof or negative testing proof (or both) before allowing someone to come into their office.  Many will do video appointments without those things.

DrinaJGB

Ah, yes, welcome to our world of over a decade. I now use the patient portal to ask all questions as it is always frustrating to try to get answers while my DH is present, and the doc is always rushed. I have always been the squeaky wheel, and that is just how it is going to be. You have to be assertive. Period.My DH has a PCP, Neurologist,podiatrist,and neuro-psychologist who diagnosed the dementia years ago, but only sees him every few years. None of them seem to communicate with each other or very little at best. It's a lonely road for sure. Good luck.

ElaineD

My advice to EVERYONE with medical issues:  Go to the closest University Medical Center.  We have TWO within 20 miles, and I have chosen the Duke University Medical Center.

Duke University Medical Center has a Memory Disorders Clinic.  If/when my husband's Mild Cognitive Impairment progresses, I will try to convince him to be evaluated.

Its specialized clinical team consists of neurologists, neuropsychologists, a geriatric psychiatrist, a nurse practitioner, social worker, and clinical coordinators who work with the patient and family to provide assistance for their medical, behavioral, and caregiver support needs.

The MDC evaluates more than 500 new patients yearly. Patients, family members, friends, or physicians can make clinic referrals. The MDC staff works closely with the patient's personal physician to determine the cause of the memory problem and appropriate treatment. After a thorough diagnostic evaluation, the MDC staff meets with family members to discuss the patient's diagnosis, care, and treatment.

Education, intervention, counseling, and access to support groups are available to patients and family members. The MDC also offers the opportunity for participation in research studies including clinical drug trials, longitudinal studies, imaging, and an autopsy program.

Clinical research studies are conducted under research protocols approved and supervised by the Duke University Institution Review Board for Clinical Investigations.

Duke also has a Clinical Neuropsychology Department, which conducts a battery of memory tests which take about 4 hours, including an evaluation by the psychologist.   

I actually asked my neurologist to refer me for an evaluation in 2019 because I was having difficulty pulling exactly the right words out of memory.  The results were that I am more than fine....just losing a bit of verbal memory recall, still above average in that category and above average in the other categories.

I'm 79 so a bit of verbal word recall is 'normal'..

ElaineD

harshedbuzz

Steve-

My dad was diagnosed at a large university affiliated memory center during which we saw neurologists, psychologists, and social workers. After comprehensive testing, dad was scheduled for annual visits which brought very little to the party. 

The most critical person on dad's care team, aside from my mother, was his geriatric psychiatrist who prescribed psychoactive medications for anxiety, depression and the behaviors these triggered. During dad's dementia journey, we saw his PCP regularly and a handful of specialists. We kept his pulmonologist to keep him breathing comfortably, the audiologist and his urologist to treat his prostate cancer recurrence (ADT/an injection x 2 yearly); we ditched the retinal specialist, cardiologist and any testing that might reveal information on which we would not act. 

By the time dad was diagnosed, he wouldn't have had the cognitive ability to do the work of talk therapy models like CBT. While the need for treatment was real, he wouldn't have been able to recognize, remember and implement new ways of thinking about things. That said, talk therapy and a psychiatrist were helpful for my mom as was her IRL caregiver support group. A couple of hospitals in my area offer a Memory Cafe which is a dementia support for PWD and their caregivers to attend together. Perhaps that would be something to try since you live in a medically well-served community. 

HB

SteveOD

ElaineD:

Yeah, we moved FROM Durham last year. One of our issues is that my wife knows that Duke Health is a great system, and she is convinced that no place can give her care equal to what she would be receiving at Duke.

SteveOD

dayn2nite2 wrote:

This part confused me.  Who made the appointment for her and was she not told before the appointment that proof of test or vaccination was needed?

The person seeing her is not going to arrange for testing beforehand.  That is your responsibility (sadly, if she is making her own appointments she may have been told about testing and forgot?).  Most providers of any care are requiring vaccine proof or negative testing proof (or both) before allowing someone to come into their office.  Many will do video appointments without those things. 

After our conversation (You really need to see someone about your depression, etc.), my wife  initiated the request for help through a message to her primary care physician via the patient portal. I was in the room with my wife when she had the conversation with the office to set up this appointment, and I heard nothing to indicate that they would require a negative test before the appointment. My wife and I are vaccinated, and we've supplied proof of vaccination to the health system, so the office staff making this appointment should have been able to access that information in the electronic medical record. And we have done video visits before, so there would have been no barrier to such a visit if the provider had requested it. I know my wife now misses details, doesn't think about all the questions she should ask, etc., but I don't think this was her "error;" rather, I think the medical system we're dealing with—or the individual provider who was scheduled to see my wife—just wasn't engaged enough.

dayn2nite2

Ok, if this was done through a portal then perhaps the testing info was not given.  I can tell you in my area, if you want to set an in-person appointment, even if vaccinated you have to bring a negative Covid test.  Otherwise it’s online only.  I don’t know if your health system is requiring it or whether that specific provider is, but if the appointment  has been rescheduled I’d call to find out how far in advance the test has to be and whether it needs to be uploaded into their system or shown at appointment.  If her depression is causing suicidal thoughts, it goes without saying she needs to be taken to an emergency room.

Iris L.

SteveOD wrote:

 My wife asked to talk to someone about the waves of depression she's experiencing,  

My wife feels (and I agree) that she is not getting the attention or coordination of care she deserves from this team (I use the term very loosely). It's bad enough to face the uncertainty of her dementia diagnosis without feeling that your doctors aren't really looking out for you. 

IMO, once there is a diagnosis of dementia, possible dementia or MCI, the patient is abandoned.  Good for those who are at comprehensive medical centers and who are getting a lot of care.  But I believe that is the exception, not the norm.  I fell into a deep depression in the early years.  I was abandoned.  I did not have a feeling of being abandoned, I WAS abandoned by my closest friends.  What got me through was support from the members on these boards and the Care Condultants.  Regardless of whatever outside "help" your wife may find, I suggest you focus on assurance that she won't be abandoned.

Iris