Alzheimer’s Care: It Starts With a Conversation and Involves Everyone

Almost all clinicians will see a patient with symptoms of Alzheimer’s or another dementia at some point in their careers, either in an outpatient or inpatient setting. According to the latest figures from the Alzheimer’s Association , there are 5.1 million Americans aged 65 years and older with the disease, and that number will climb to more than 13.8 million by 2050. Yet only 45% of Alzheimer’s patients or their caregivers report that they received the initial diagnosis directly from their doctor.

Giving a patient this diagnosis is undoubtedly among the most difficult conversations a doctor may ever have. The first time I ever told a patient that she had Alzheimer’s, it didn’t go well. I’m sure I squirmed and used some vague and evasive language. But, after decades of experience with Alzheimer’s patients, I can now confidently say that patients are grateful when their doctor is direct and honest about what is happening. They can face the facts. They can work with their clinicians and their families to plan what’s next, explore what treatments are available, and determine how they will try to shape their new lives.

While “what’s next” involves both medical and nonmedical interventions, we at Banner Alzheimer’s Institute (BAI) believe that about 80% of what is needed is the nonmedical assistance for the patient, caregiver, and family. This approach, part of our “Model of Care,” is centered on both the patient and family and is consistent with guidelines such as those published by the American Psychiatric Association in its
October 2014 Guideline Watch for the treatment of patients with Alzheimer’s and other dementias.

Based on years of experience in caring for these patients, we have now developed a model for the primary care setting called the “Dementia Care Initiative.” In this model, primary care providers are trained to evaluate a patient for a diagnosis of Alzheimer’s disease or another dementia; determine if it’s mild, moderate, or advanced; and then implement a treatment plan that is a mix of interventions that successfully address a patient’s needs in terms of behavior and psychological state, daily function, cognition, and stimulation. This checklist-type plan is tailored to the severity of the patient’s dementia and his or her unique needs.

For example, a primary care physician will see a patient with mild dementia and identify potential triggers for depression, anxiety, and irritability. A case worker will work with this patient to assess his ability to perform activities of daily living and will provide the patient with educational resources and review topics such as power of attorney and long-term care.

For a patient who has moderate Alzheimer’s, these interventions go one step further. The physician will evaluate the patient for any new behavioral problems and determine the need for medications. The case manager will assess any changes in the patient’s ability to perform activities of daily living and recommend additional help, if needed, for tasks such as meal preparation and personal care. The case manager will also continue to discuss the importance of a power of attorney and, if the patient lives alone, ensure that the patient is placed in a more secure setting.

We know how important it is not only to educate family and caregivers about the progression of the disease and equip them to help the patient, but also how important it is to help teach caregivers how to take care of themselves. The success of BAI’s Model of Care and the primary-care-setting Dementia Care Initiative is due in large part to the simple act of listening to patients and family members and giving priority to their most pressing needs. Time and time again, patients and family members tell us that they feel relieved to know that they have really been heard. They are relieved that clinicians are finally listening to both the patient and family, working with them to help them fully understand what they will all be going through, and helping to improve patients’ quality of life and maintain their dignity.

Financial disclosure:Dr Tariot is a consultant for Abbott, AbbVie, AC Immune, Boehringer Ingelheim, California Pacific Medical Center, Chase, CME Inc, Corium, GliaCure, Lundbeck, Medavante, Otsuka, and Sanofi-Aventis; is a consultant for and has received research support from AstraZeneca, Avanir, Bristol-Myers Squibb, Cognoptix, Janssen, Merck, and Roche; has received research support only from Baxter Healthcare, Functional Neuromodulation, GE, Genentech, Novartis, Pfizer, and Targacept; has received other research support from NIA and AZ Department of Health Services; is a stock shareholder of Adamas; and is a contributor to a patent owned by the University of Rochester, “Biomarkers of Alzheimer’s Disease.”