In the complex spectrum of Alzheimer’s disease (AD), the role of the physician is central not just to patients’ clinical outcomes but also to their well-being. As with so many chronic diseases of old age without a cure, effective care for Alzheimer’s disease spans beyond the accepted limitations of treatment. Certain therapeutic options are symptomatically effective, but these are often not enough to curb the devastating and costly effects of AD.
Thus, care management remains arguably the most important component of treatment, according to Howard Fillit, MD, Clinical Professor of Geriatrics and Palliative Medicine and Neuroscience at Mount Sinai Health System in New York, and Founding Executive Director and Chief Science Officer of the Alzheimer’s Drug Discovery Foundation (www.alzdiscovery.org). Recalling the famous Hippocratic axiom, “Cure sometimes, Treat often, Comfort Always,” Dr. Fillit believes that education, counseling, and working with patients, families, and loved ones to manage the illness from diagnosis to death should be a major emphasis of the effort from physicians treating patients with AD.
Communication with Patients and Caregivers
“Working with families to do advance care planning and dealing with crises as they come up—and they inevitably do—is critically important,” Dr. Fillit explains. When patients and loved ones arrive at the doctor’s office, they are looking for more than just a treatment, according to Dr. Fillit: They are looking for knowledge, guidance, and help. Often these require long, frank conversations.
On the issue of knowledge, Dr. Fillit notes that many patients and families experience confusion about AD itself. “I so often get families in my office who have been to several doctors or haven’t been diagnosed or diagnosed properly,” he notes. Moreover, patients’ understanding of the condition often requires explanation. “I’m amazed that in 2016 I’m still asked by patients what’s the difference between dementia and Alzheimer’s,” Dr. Fillit observes. That alone, he suggests, is part of the framework for discussing the illness with patients and families.
These issues are ultimately the introduction to a host of other discussion points related to care management that are so important. And in a condition such as AD, patients rarely come to the physician alone. “When I see a patient with AD, I almost never see them alone,” says Dr. Fillit. “I always try to see them with the caregiver or caregivers. Whether seeing patients with spouses or companions, sons and daughters, or home health aides, I want everyone in the room,” he explains. “In the case of AD, care is a team effort.” Having direct communication with those who will be most involved in the care of the patient is critical, according to Dr. Fillit. “I always want as many people who are involved in care to be present and involved in the room with me, and I want to hear everyone’s input.”
No matter how many folks are in the room, however, Dr. Fillit believes the best first step is to start talking to the patient. “I do that out of respect for the patient, but I also want to find out where that patient is on the spectrum of dementia and determine how much of a conversation I’m going to have with them and the family.” These conversations will help determine how much care will involve the patient directly as well as the extent of the patient’s impairment. “If a patient has very significant cognitive impairment or they are not understanding what’s being exchanged, then I don’t want to stress them and I often work more directly with the caregivers.”
The next step, then, is determining the patient’s and/or caregiver’s comfort and wishes for an open discussion. For example, caregivers may have specific requests regarding what’s in-bounds for discussion. One example of this is the use of the world “Alzheimer’s,” says Dr. Fillit. “Some families may request that you not tell the patient that she or he has Alzheimer’s disease.” Some families prefer physicians to use broad terms like “memory loss,” he notes. “There is some literature on this to the contrary, but in my practice I don’t find it useful to force the issue if the patient may not remember or finds it distressing,” Dr. Fillit says. “Whether you use the terms with patients or not, it’s not going to change the way you or caregivers care for patients.” In fact, he says, patient comfort and care should be the physician’s number one priority. Thus, obeying the wishes of a family or health care proxy is often advisable.
Caregiver Conflicts: The good, the bad, and the ugly
Another reason to have as many people as possible in the exam room in the first visit is to ensure consensus, according to Dr. Fillit. “You want to resolve any conflicts if you can among family members or between intentions of caregivers versus the wishes of the patient,” he explains. Some conflicts among families and loved ones can be particularly difficult, even disturbing, Dr. Fillit notes. “Sometimes they revolve around money, place of residence, or sometimes they are about the caregiving.”
In general, there is significant potential for conflict in the scope of Alzheimer’s care due to the nature of the disease. “Often, elderly people resist intrusion on their autonomy,” says Dr. Fillit. Therefore, even in the best circumstances in which loved ones are agreeable, conflicts are bound to arise.
“Let’s say a couple is living in a house or apartment and they’ve been married for 50 years; the wife has mild dementia and is dependent on her husband who has increasing cognitive impairment.” In situations like this, care can be overwhelming and stressful. “The daughter may live 10 miles away or 1,000 miles away and may suggest with the very best intentions that bringing in a home health aide is appropriate, but the mother may express her wish not to have anyone in their house for a variety of reasons.” This is just one example of a situation that needs to be dealt with and resolved as care gets underway.
Money also presents significant conflicts. “The daughter might insist that the parents have enough money for home health aides, but perhaps the mother doesn’t want to spend the money and doesn’t feel the need for an aide. Then, if the parents are agreeable to a home health aide and have the money to pay for it, another member of the family may not feel it’s worthwhile and doesn’t want the parents to spend their inheritance.” Sometimes caregivers have varying roles in parents’ lives (e.g. distance of living from parents, income levels, etc.), which can be a challenge for physicians to navigate, particularly when family members bring other sources of stress to the office. Moreover, the caregivers’ knowledge about dementia and care varies immensely.
According to Dr. Fillit, the physician’s role is to take care of and protect the patient and therefore to help resolve these conflicts. “In the context of protecting the patient and offering comfort and safety in care, the doctor is mandated to first and foremost determine care needs and ensure those needs are met within the confines of the caregivers’ capabilities.” Among those responsibilities is the assessment for and prevention of elder abuse by spouses and children, says Dr. Fillit. “Ultimately, physicians need to be very careful when evaluating whether there is potential for abuse.”
An emotional bond
When it comes to patient care and communication with caregivers in the treatment of Alzheimer’s disease, physicians are faced with immense challenges deserving of much time and consideration. “What we’re talking about here is the art of medicine,” notes Dr. Fillit. “There are commonalities among patients, but every patient is nuanced and every family is nuanced.” While there are a host of resources online and in print where caregivers can acquire information, Dr. Fillit believes that physicians need to be at the center and actively guiding patients and caregivers.
“I have never met a family or patient with AD that I couldn’t help in some way, even if therapeutic outcomes are not optimal,” he imparts. “All patients need help and they all need our guidance. Patients want the face-to-face emotional bond with physicians who really care about them.” n