Communicating and Partnering with Your Doctor
Guest Speaker: Roberta Wattleworth, DO,
April 18, 2005
Q: How is the diagnosis of Alzheimer’s
Disease or related dementia made?
Who needs to make that diagnosis?
Senior Dementia of the Alzheimer’s Type (SDAT ) is a diagnosis made by exclusion. It is pretty routine for physicians to order a battery of blood tests, CT scan and MRI to assist with the diagnosis process, as well as to look at patterns of behaviors.
Many medical problems can cause dementia or manifest similar behaviors to persons with Alzheimer’s disease. Thyroid problems, syphilis, and strokes are some of these problems that need to be ruled out.
Family physicians, internal medicine specialists, gerontologists, neurologists as well as other physician specialists may make the diagnosis. Often times a family physician will refer the person to a neurologist for specialized tests and the confirmation of the diagnosis.
The earlier medications are started, the more the devastating aspects of the disease can be delayed and slowed down. However, medications won’t stop the disease.
Q: What information should be brought to a
doctor’s appointment to make the best use of the doctor’s time and meet the
concerns of both the family member and the patient?
It is not uncommon for families to
experience denial of problems and delay getting medical intervention until the
disease process is in its second or third year.
Sometimes the person getting lost, or the death of a spouse who has been
the primary care giver, may bring the problem to a head, and precipitate the
call to a physician.
It is helpful if two appointments can be made sequentially with the family doctor – one for the family member who is experiencing problems, and one for the spouse or concerned person, with the concerned person going first. By meeting separately, the concerned person can express their concerns to the physician without embarrassing the patient or having the patient deny the experiencing of problems.
Family members should make a chronicle of how the disease started, what were the first symptoms that were noticed, when were they noticed, what other symptoms are noticed, when did they start, and how frequently do they occur. Some of the symptoms that might be noted are repeating of questions, getting lost, leaving the stove burner on, weight loss, misuse of funds, gullibility or being easily taken in by phone sales or solicitations.
The first time a person meets with a physician, they will be asked to fill out a medical history. It is helpful to gather together the information ahead of time that would include the major illnesses the patient has had, diseases or conditions they have had or are currently being treated for, any surgeries the person has had, and any hospitalizations the person has experienced, along with the dates of treatment for each of these. Make sure you list out the physicians that have treated each, as well.
It is important to also bring with you a list of any known allergies, especially to medications, and how that allergy is experienced. In addition, you need to bring a list of all medications and dietary supplements, along with the dosage of each, that the person is taking. Dietary supplements include all the vitamins and minerals and health supplements that are taken such as gingko balboa, Echinacea, and so forth. The information about medications and allergies is something that you should carry with you in your purse or billfold, or in the glove compartment of your car, in case of an emergency trip to the hospital where the information will be important.
If the patient has a durable medical power of attorney, advance directives and / or a living will, this is a good time to give these to your physician as well.
Q: When the diagnosis of memory impairment is
made, do we need to switch our medical care to a specialist, or can our family
physician provide adequate care?
Even if a specialist such as a gerontologist or a neurologist has made the diagnosis of Alzheimer’s Disease or related disease, it is quite appropriate for the family physician to treat and follow the person as they know the family and have a longer history with the family than a specialist may. The family physician and specialist will communicate with each other as well as with you.
Q: What is the best way to communicate to a
physician or other health care provider who is not the main physician of the
patient that the patient has short-term memory impairment and may need
accommodations?
If the primary care physician or your family doctor has referred you to a specialist, your doctor will prepare a summary of information for the specialist. Information about the memory impairment will be included in the summary, along with current treatment information.
Occasionally a need will arise for emergency medical treatment, such as through a local hospital’s emergency room, where this advanced information is not available. It is then up to you to let the nursing staff and the treating physician know that ;your family member has dementia and may need some special accommodations such as having another family member with them while information is being communicated or consent is required.
Q: What is the best way for family members to
relay their concerns to the doctor when the patient denies they are
experiencing a problem?
It is helpful if two appointments can be made sequentially with the family doctor – one for the family member who is experiencing problems, and one for the spouse or concerned person, with the concerned person going first. By meeting separately, the concerned person can express their concerns to the physician without embarrassing the patient or having the patient deny the experiencing of problems.
It is important to remember that the caretaker needs respite, too. The doctor may ask after specific needs of the caregiver: stress level, sleep, nutrition, and general health and so forth.
Q: When do we need to look at putting our family
member into long term care?
When the caregiver can no longer provide care without physical, emotion, psychological cost to self. When safety is an issue. When a caregiver can no longer provide the physical aspects of care. It is not failure for a caregiver to give up.
The person who is the caregiver needs respite. There are several options to long term care such as companionship, home health care, hospice, day care, respite care. The Alzheimer’s Association can help you identify some of the sources for this early help.
Q: What questions should I ask a physician?
What is the prognosis? How long can my patient stay home? What treatment options are available? What are some alternative solutions? What are the pros and cons of each option? Why do you recommend a particular option?
Q: How important is it for a patient to wear a
Safe Return medallion or a Medical Alert medallion? Do hospital ER’s or ambulance service medics
really look at that information?
It is very important for people to wear medical alert medallions or bracelets. These are some of the first things medical people check for, along with evidence of pacemakers, Pick lines and so forth. Medical Alert medallions should list allergies to medications and specific medical problems, including dementia or memory impairment. Primary caregivers should also wear medical alert medallions indicating they are the primary caregiver of a memory impaired person in case they are in an accident, help can be sent to the memory impaired person as well.
Safe Return medallions should be worn if there are no other medical problems. Safe Return medallions will help medical people be alert to the fact the person they are working with is memory impaired, and if the person wanders, it will help them get back home.
Q: How are advanced directives, living will, and
medical powers of attorney used, and who should have copies of them?
Advanced directives and living wills can be as specific or general as you want. They make known to your family and your health care providers the extent of care you wish to receive. You must be competent to sign the documents, and the documents must be witnessed by someone who is not a relative or who would benefit from the advanced directive. An attorney will be at your next meeting to talk more specifically about how to write these documents.
Once a person has been identified as memory impaired and incapable of making informed choices, they can no longer execute an advanced directive or living will or medical power of attorney, so it is important for each of us to have those documents in place before we need them.
You need to give your doctor a copy of your advanced directives and living will, another copy needs to go on your chart at the hospital when you are admitted for treatment, and additional copies should be in the glove box of your car, and in the hands and accessible to family members who may be called to the hospital in an emergency.
Regarding advanced directives: Physicians who were surveyed about their top three wishes as death approaches have identified that they want to be pain-free, not be hooked up to machines, and to chose where to die. Lay people who were surveyed said they also want to be pain-free, to chose their own time of death, and their own place to die. It is significant to note that physicians don’t want to be hooked up to machines as they perceive that as torture. Just because doctors CAN prolong life, doesn’t mean that we have to pull out all the stops to prolong life. Death is an acceptable alternative, too.
People can use Hospice for help in the end stages of Alzheimer’s Disease. It is an underutilized service.
Q: What are some general tips for slowing the
progress of Alzheimer’s disease in our loved ones, and what can WE as family caregivers do to keep ourselves healthy?
To forestall the causes of Alzheimer’s disease, avoid exposure to heavy metals, avoid excessive alcohol consumption, maintain good cardiac health, avoid salt, eat a low fat diet, control high blood pressure, and stay mentally and physically active. The more you keep your brain active, the more you can forestall the problems, as much as four to six years.
Good care needs to be given to persons with Alzheimer’s Disease, but it doesn’t need to be the same care giver all the time!