A NEW PLATFORM FOR VIRGINIA FAMILY CAREGIVERS

Introduction and Invitation

by Dr. E. Ayn Welleford, Co-Chair, Education Core, VACAPI

With family caregiving accounting for 80% of all long-term care and over 740,402 caregivers in Virginia providing 793 billion hours of care, we are facing a major challenge that will only expand with the projected growth of the aging population.  Virginia Department for the Aging's Commissioner, Julie Christopher, indicated during a meeting of December 2006, that one of the most important issues in resolving this challenge is to bring together every organization that has an interest in the issue and work together, as a united front.

With this as a preamble, we implement Commissioner Christopher's direction by initiating a new dynamic community for Virginia caregivers, dedicated to learning, sharing and formulating concrete solutions to the wide scale of problems relating to caregiving.  Developed as a set of topic-driven forums and anchored in monthly newsletters and live discussions, this new platform will serve to report on the latest scientific findings, to promote learning and debate, to speed the dissemination of new ideas and create an effective dialogue across disciplines, industries, organizations and geographic areas.

One of the distinctive features of this free-for-all community would be its approach to discussing specific topics, which, effectively, would parallel the caregiver's perspective with the one of the health professional, support service professional, etc., as well as your very own.  By complementing these angles on the same topic with live discussions led by top researchers and clinicians in the field, we realize a multi-dimensional library of interrelated debates, solutions and perspectives. 

The Education Core of VACAPI - in charge with editing this virtual community - is comprised of academic experts, professionals in the field of support services as well as caregivers who work together to ensure a high-quality of information and services.  Should you wish to become involved with this group, we want to hear from you!  Just drop us a quick line at virtualcenter@alzpossible.org.  

We invite all of you out there to join our forums, subscribe to our monthly newsletter and learn with us about care strategies, community resources, family issues as well as local and regional resources. 

This online community does not endorse any specific product or scientific approach.

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HOW DO YOU COMMUNICATE WITH YOUR PHYSICIAN OR YOUR LOVED ONE'S PHYSICIAN?

How do you communicate with your physician or your loved one's physician so you feel you are being heard and getting the results you know are needed?  Many of our caregivers take a list, bring along an advocate, or in drastic times find another physician. What approaches have worked for you?

Read below three separate perspectives and submit your comments in our forum.

Caregiver's Perspective

How to Talk to Your Doctor - a Caregiver's Perspective

By Mike Coston – Sole Caregiver of Un Sun

I have prepared a list of all the medications my wife is taking. I bring the list with me to Doctor's Office - when we go to the hospital ER I always bring three of four copies. The list gives the name of the drugs, the names of all her doctors with phone numbers, allergies, and a history of hospitalizations. It is easier than having to regurgitate it each time. Even though the hospitals that we use have a copy of her living will, I bring a copy of that along attached to a copy of my guardianship order. You can never give them too much information!

Given that our doctor appointments rarely last more than 15 minutes with the doctor actually in the room and most doctors enviably, interrupt me within 20 seconds after I begin to explain what is wrong, preparing in advance staves off frustration.  So if you plan, you get value out of the visit. Just like the boy scouts say, “Be prepared”.

Take notes – better yet, bring along a tape recorder so you are sure to remember what the doctor said. It would be a shame to leave the office thinking you had cancer, when all the doctor wanted was a biopsy to rule out a dark spot on your mammogram.

The day before we go to the Doctor's office, I write down all of our concerns - I double space the list and put a box at the end of each line to check off as it is discussed during the appointment.  I list things like blood pressure results, weight changes, bowel movements, fluid intake, diet, exercise, along with her concerns and mine.  Again, it is easier for me, and it relieves both parties from wrestling over every little thing.  List the most urgent things first, just so you can get the most benefit out of your visit.  Make sure you list anything related to your loved one's health problems that may have occurred since the last visit, and if this is a new doctor, make sure you bring notes, X-rays, and other records from your last doctor.  When you come prepared, you are telling your physician that you are serious and you respect his or her time.  Although I might be the one taking the responsibility for my wife’s care, I insist that the doctor includes her in the conversation.  Once when visiting a new EENT doctor, he spent the examine session talking to me with his back to my wife.  Even when he was digging potatoes out of her ears, he was talking to me – as if she did not exist.  When I brought this up to him and asked that he include her, he told me, “well, she really isn’t all there you know”. I can promise you she will never be “there” again for any reason.

Tell your doctor how much you want to know.  Maybe you do not need the textbook explanation, maybe just knowing the treatment plan and goals is sufficient.  Our doctors always seem to appreciate it when I tell them what level of interest I have – it gives them the time to tailor the treatment plan to fit our needs.  If the doctor is not listening, tell him, if he does not change, get another Doctor. 

Mike to Doctor: "She just fell out, Doctor."

Doctor-talk: "She might have sustained a syncopal event.”

We both mean that she probably fainted.  Were we talking? You bet. Were we communicating? No way!

Talk with your doctor about your total condition, even if the topic embarrasses you.  I had problems talking to our primary care doctor about my wife’s incontinence, and her never-ending yeast infections, but soon realized that if I was her advocate, I needed to put aside my insecurities and be open with the health professionals.  My wife says that the Doctors scare her because she thinks they might “bite her [me]”.  We have not been bitten yet!  Physicians are trained to help with issues you would not want to discuss with anyone else.  If you still have problems talking about it, write it down on your prepared list and make it one of your higher priorities.

I monitor my wife’s prescriptions closely, not just because they can make her sick, and they cost a lot of money, but because sometimes Doctors forget that many drugs do not go well with Warafin.  Ask about any new medications your doctor prescribes. Involve others in your problem solving, for instance once upon a time a physician insisted that my wife take Lamisil to combat her toenail fungal problems. He insisted that the interference rate with the Warafin was over stated in the literature and it was important to knock out the fungus.  I took the prescription to my favorite pharmacist, and she absolutely forbade me to fill the prescription, called the doctor, and told him why.  When your doctor hands you the prescription, make sure you know the following: What is the name of this medicine, and why is the doctor prescribing it?  How, when, and for how long should you take this drug?  Is there anything to avoid while you are on it, such as certain foods, drinks, or other medications?  Should you avoid driving while you are taking these pills?  What are the possible side effects, and which ones should you be concerned about.  What should you do if they occur?  Discuss everything before you leave the office, and if you have any doubts or concerns express them, so you do not waste both your time and your doctor’s by silently nodding your head in agreement and throwing the prescription in the trash when you leave.

Sum up the visit in your own words.  Before leaving the office, say, "So today you recommended that I..." and recap your understanding of what your doctor told you.  Then, if there is any confusion about your condition, treatment, or medication, your doctor can clear it up on the spot.  Ask the doctor if you can communicate directly with him/her or his health staff using E-Mail, or best to speak with him in the event of an emergency.

I also find that by thanking the Doctor and speaking on friendly terms (even though you might be upset) seems to sooth them and make them more willing to spend an extra minute or two with my wife.

Un Sun and I have been blessed by four wonderful Doctors – they meet the litmus test of caring providers, willing to listen, willing to explain, and willing to be part of a cooperative effort in treating not just the illness but also the whole person.  Consider this if you will -  Dr. Roosevelt Gilliam, was Un Sun’s first cardiologist with the Virginia Cardiovascular Service – he put in her 1^st pace maker, spent time at her bedside explaining what was going to happen and why, and calming her with his quiet countenance.  He was the electrician and Dr. Phillip Duncan was the plumber – we did not need a plumber to fix her raging heart, but you could not have asked for a better electrician.  Sadly, Dr. Gilliam left Virginia to teach at Duke University.  Happily, Dr. David Gilligan stepped in.  Dr. Gilligan listens, explains, then explains again, he shares a joke or two, and truly cares about my wife and how we can make “this dear sweet lady” if not new, at least not worse.

We got Dr. Robert White because he happened to be the neurologist on duty the night Un Sun had her stroke.  He sat me down and explained in clear concise terms what had happened, and what he intended to do.  From that day to this he has been supportive, always willing to see my wife and always willing to explain – often-drawing diagrams on the back of drug rep note pads.  He has written letters of appeal when we were fighting the insurance company, and he has listened when I asked for re-evaluation of medicines, or modification of the doses.  If there were an award for superlative doctors, I would nominate Dr. White every time.

Lastly, our primary care physician, Dr. George Maughan and his Richmond Family Practice has been a rock when we needed one. Doctors often are so focused on making sick people better — or so rushed — they forget to talk about important health matters like diet and weight, exercise, stress, sleep, tobacco and alcohol use, sexual practices, vaccines, and tests to find diseases. Dr. Maughan does not fall into this category – he always reminds us of tests that we need, how to stay on top of Un Sun’s INR issues, and he has become the captain of our health care ship – and frankly, I am extremely happy that he has taken on that role.

You are in a health partnership with your doctor, so you need to be an active participant in your care. Be assertive, but not aggressive, to make sure the doctor is meeting your needs.  Communication involves the exchange of ideas and requires listening as well as speaking. In healthcare, good communication provides the best outcomes with the least mistakes.

Contact us to comment on Mike Coston's perspective or

visit our Forum to enter it directly.

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Physician's Perspective

How to Talk to Your Doctor:  A Physician Perspective

by Russell H. Swerdlow, MD - Chair, Virginia Commission on Alzheimer's Disease and Related Disorders, Association Professor, University of Virginia 

Alzheimer’s disease challenges those affected by it, their families, and their physicians.  When it comes to the diagnosis and management of Alzheimer’s disease, it is important all involved parties mutually respect each other.  While this is self-evident, it can be more challenging than expected.  This article will try to provide some insight into the physician’s perspective of diagnosing and managing Alzheimer’s disease, since understanding this perspective may help patient advocacy.

It is important to recognize Alzheimer’s disease is sometimes difficult to recognize.  It is one of a dwindling number of major diseases diagnosed the old fashioned way – by talking with the patient and family and performing an exam.  This allows the physician to catalogue the patient’s symptoms and signs.  In this regard, it is important to define the difference between a symptom and a sign.  A symptom describes what the patient is experiencing.  A sign describes what the physician actually observes with the patient.  For example, with Alzheimer’s disease the symptoms described to the physician may include memory and word finding problems.  The physician on exam may then observe signs of amnesia (inability to remember) and aphasia (impaired communication).

When taking the history, the physician needs to know whether the patient’s symptoms are bad enough to disrupt independence.  For example, has the patient’s spouse felt a need to look over or take over paying the monthly bills?  Has the patient’s spouse felt it necessary to make sure medications are taken directly?  Has the patient gotten lost in a familiar area?  If the patient is working, is job performance affected?  Is the patient able to keep up with their hobbies?  Information such as this helps the physician decide whether enough decline has occurred to justify a diagnosis of Alzheimer’s disease.

The physician also needs to know the pattern of symptom onset.  Alzheimer’s disease tends to develop insidiously, and progress over time.  For a person living with someone who is developing Alzheimer’s disease, the earliest symptoms may seem less like symptoms of a disease and more like a series of minor mistakes, accidents, or oversights.  Moreover, different family members may have different thresholds of concern and give quite different histories.  For example, one child may say “dad forgot to pay the phone bill last month”, while another child says “ever since I can remember dad’s been so absent minded it’s a wonder he manages to pay the phone bill every month”.  Also, it is often a dramatic event that prompts an Alzheimer’s evaluation, and family members may focus on that one event to the exclusion of mentioning the “little things” noticed in the weeks, months, or years preceding that dramatic event.

Once the physician has enough information to judge the course of the symptoms and the severity of the symptoms, it is necessary to actually observe what is being discussed.  Probing deficits on exam can be unpleasant for the patient or their family, but it is necessary.  It is important to note examining cognition is more time consuming than examining virtually any other system.  A physician only requires seconds to listen to a patient’s lungs with a stethoscope.  To probe a patient’s cognitive strengths and weaknesses takes considerably longer.  Further, the milder the symptoms, the harder the physician must probe to detect actual signs.  Different physicians will have different degrees of training and comfort when it comes to examining cognition.  For the trickier cases, general physicians may choose to consult colleagues who are able to perform a rigorous cognitive examination.

If the physician concludes the patient has an insidious, progressive course and signs of cognitive decline, the next step is to consider potential causes.  There is a recommended panel of blood tests for such patients which checks for routine things like vitamin deficiency.  Imaging of the brain to look for strokes or other visible culprits is also advised.  It is rare, though, that a non- Alzheimer’s disease cause will be revealed through these tests. In the older person with an insidious, progressive course and appropriate exam signs, statistically speaking the most common cause is Alzheimer’s disease. 

Based on this, the physician needs to guess whether Alzheimer’s disease is likely enough to justify actually making such a diagnosis.  Just as the patient and family will end up living with this diagnosis, so will the physician.  Because the diagnosis is mostly a judgment call, a lot of second-guessing may result.  Second-guessing can come from the patient, the family, the physician making the diagnosis, and also other physicians participating in the patient’s care.  So that’s how the diagnosis is made.  As much as everyone wants one, there is no “yes or no” test for Alzheimer’s disease.  Thus, unless the history and exam are clear-cut, a physician may be reluctant to go out on a limb. 

Managing the Alzheimer’s disease patient is equally tricky.  The physician may be able to help slightly or address particular problems through the use of medication, but given enough time the patient’s symptoms and signs will get worse.  Just as patients and families can grow frustrated over their physician’s inability to fix the problem, physicians can also experience frustration from this limitation. 

At times families may feel physicians are reluctant to address certain problems.  While this may represent a deficiency on the physician’s part, sometimes this is less reluctance than it is a consequence of limitations.  Many of the hardships faced by patients and their families are simply not things a physician can resolve. 

It’s no secret that even under the best of circumstances diagnosing and managing the Alzheimer’s patient is challenging for physicians.  One of the biggest challenges is a consequence of the fact that in today’s managed care environment, physicians are often unable to take as much time with Alzheimer’s patients as they should or would like to.  Here’s food for thought:  on the managed care hierarchy, freezing a wart is considered a far more valuable service than diagnosing and managing a patient with Alzheimer’s disease, even though diagnosing and managing an Alzheimer’s disease patient is infinitely more complex and time consuming.

In summary, here are some pointers for helping you help your doctor.  Prepare what you want to tell the physician so that key questions such as symptom onset and severity are clearly addressed.  If multiple family members are going to be present, it is helpful to determine whether everyone agrees on the presenting or interval history.  Maintain realistic expectations of what the physician can accomplish, and recognize some issues may be better addressed by other professionals (such as social workers).  If you don’t feel like there is a good patient-caregiver-physician fit, feel free to try another physician.  Finally, channel frustration into advocacy.  If you want our health care system to work better for patients with Alzheimer’s disease, make your voice heard by those who have the power to change it. 

Click here to read more about Dr. Swerdlow and his work. 

Go to our Forum to enter your comment on Dr. Swerdlow's perspective.

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Educator's Perspective

How to Communicate with your Health Care Provider - A Researcher and Educator's Perspective

by E. Ayn Welleford, PhD - Chair & Associate Professor, Department of Gerontology, Virginia Commonwealth University
 

My grandmother used to tell a joke. “Doc, my knee hurts.”  Doc replies, “Ma’am you’re 80 years old, what do you expect?” Puzzled, Grandma responds, “Well… my other knee is the same age and it doesn’t hurt.”

As a researcher and educator my role is to collect information, survey the empirical evidence, summarize into a concise and deliverable package that is applicable and useful to a variety of audiences. In other words, the information that I share must be helpful in improving the life of the individual.  In the case of “Communicating with your Health Care Provide” there are many resources available. One excellent resource is the Agency for Healthcare Research and Quality (AHRQ) web resource “Questions are the Answer”.  Many of the topics addressed in this resource echo Mr. Costen’s approach with his wife’s care and advocacy: Give Information. Get Information. Follow Up. Understand your Diagnosis. Choose Quality Care.  The “Question Builder” seems like an excellent tool, especially if you’re having trouble getting started with your own questions. http://www.ahrq.gov/questionsaretheanswer/questionBuilder.asp

Why does this seem so difficult? Think back to my grandmother’s joke. In many respects the underlying issue is much larger than asking the appropriate questions or taking a friend along to take notes. We all fall victim to negative attitudes about aging, health professionals and elders themselves are not immune.  Ageist stereotypes can explain some of poor healthcare quality; lack of gerontological and geriatric training among health care providers also contributes. Our nation is experiencing a shortage of trained and qualified health professionals in aging. Gerontology (the scientific study of age and aging) and Geriatrics (the medical discipline of aging and disease) are still very new fields. In order for these fields to grow consumers must demand exceptional care. The answer lies in self-advocacy, building your knowledge about your own care, challenging your health care provider, demanding quality care.  And doing this all when you’re sick or caring for someone else when they are sick.

There are support services available.  The initiatives of VACAPI are intended to point caregivers in the Commonwealth to the services provided by their local chapter of the Alzheimer’s Association, local Area Agencies on Aging, and the numerous other support services available. While you care for your loved one, we will be here to support you, provide education and resources for health professionals, and demand better care on your behalf.

Click here to read more about Dr. Welleford's work.

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ADDITIONAL RESOURCES

Quick Tips—when talking with your doctor -www.ahrq.gov/consumer/quicktips/doctalk.htm

Build your question list before going to see the doctor! - www.ahrq.gov/questionsaretheanswer/questionBuilder.aspx

Questions are the answer: www.ahrq.gov/questionsaretheanswer/ 

Additional patient safety resources: www.ahrq.gov/questionsaretheanswer/level2col_1.asp?nav=2colNav01&content=06_0_resources

Carefinder -

http://www.alz.org/carefinder/index.asp

Contact us to suggest another resource or click here to post it in our forums.

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CONNECT-AND-LEARN OPPORTUNITIES IN YOUR AREA

Partnering with your Physician - program run by all Alzheimer's Association chapters of Virginia.

If you have any pertinent events to post in our newsletter, simply send us the details!  Here's a list of topics per newsletter:

Communicating with your physician

Falls

Skin care skin breakdown

Incontinence

Transfer

Medication related issues

Durable medical equipment

Red flags : signs it's time for a change in care

Caregiver’s health, stress and burnout

Attitude, Attitude, Attitude!  

Funding healthcare and long term care 

Nutrition

Contact us to suggest another event.

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LIVE DISCUSSION: Partnering with Your Doctor - A Workshop for Persons with Memory Problems and their Care Partners - FEBRUARY 29, 2008, 12 pm EST

Mary Ann Johnson is the Program Director for the Alzheimer’s Association, Greater Richmond Chapter (www.alz.org/grva/).  In this position, she oversees all core chapter services and is responsible for developing new curriculum training programs. 

Mary Ann had served on committees for the National Alzheimer's Association to review programs, committees to develop evaluation tools for core services for the Association, the committee to review implementation of early stage support groups, the mission focus committee for Early On-set/ Early Stage, the development committee for the End of Life Module for Foundations of Quality Care.  She had also developed a training program for hospital staff, parish nurses and clergy and lay leaders of faith based communities.

Mary Ann holds a Masters in Christian Education from Union-PSCE and is a Master Trainer for Alzheimer's Association's educational programs.  In addition, she chairs the Innovative Program Committee, Program Clearinghouse, National Alzheimer’s Association and is the co-author of “Caregiver Burden in Alzheimer’s Disease,” Consultant Pharmacist, April, 2004.  Mary Ann is the recipient of the 2005 Mary Ellen Cox Award for Advocacy for Seniors from Senior Connections-Area Agency on Aging.

Wish to contact this speaker? Send us a message or address your question in our Forum.

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LIVE DISCUSSION: EFFECTIVE COMMUNICATION BETWEEN PHYSICIAN AND CAREGIVER - webinar recorded May 31, 2007

How do you communicate with your physician or your loved one's physician so you feel you are being heard and getting the results you know are needed?  Many of our caregivers take a list, bring along an advocate, or in drastic times find another physician. What approaches have worked for you?

Review the webinar held the 31st of May, 2007, featuring Drs. E. Ayn Welleford (Virginia Commonwealth University) and Russell H. Swerdlow (University of Virginia) and join us for further discussion in our forum.

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DISCLAIMER: The Virginia Alzheimer Commission AlzPossible Initiative does not provide medical advice nor promote any product or service. The contents of this newsletter are for informational purposes only and are not intended to substitute for professional medical advice, diagnosis or treatment. Always seek advice from a qualified physician or health care professional about any medical concern, and do not disregard professional medical advice because of anything you may read in this newsletter.

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