Empowering people with Alzheimer's disease and their caregivers -- there is still much work to be done

My wife was diagnosed with early onset Alzheimer’s Disease (AD) at the age of 63. My wife was repeatedly asking me the same questions over and over, getting lost while driving, experiencing aphasia and agnosia, unable to follow cooking recipes, etc. When the AD diagnosis was issued, it was a tremendous shock to my wife, who was in complete denial. For me, however, the diagnosis was a sad confirmation of what I had long been expecting. 

When we left the doctor’s office after that AD diagnosis, we were given no written materials indicating what to expect in the near or long term. There was no information about websites we could consult or books we could read to learn more about AD. There was no mention or discussion of support groups. We had to research all of that on our own. I have since learned from members of my real and online support groups that our experience is all too common … doctors do not readily provide helpful information to AD patients or caregivers, nor do they make patients and caregivers aware of support groups.

Such a lack of communication from doctors is inexcusable. Doctors should provide written handouts for patients and caregivers upon diagnosis … or at a follow-up visit shortly thereafter … so patients and caregivers can be more aware of this disease and have informed conversations with their doctors. I can understand if doctor wants to wait a few weeks after issuing an AD diagnosis before providing such a handout. Caregivers and patients may know very little about AD when they hear this diagnosis, and they may react with surprise, denial, fear, helplessness, sadness, anger, and a variety of other emotions. Even if aware of declining memory, cognitive, or executive functioning skills, the last thing patients and caregivers want to hear is a diagnosis of Alzheimer’s. A period of several weeks before further discussion about the disease, to allow patients and caregivers time to fully process that diagnosis, may be warranted. But patients and caregivers need to be fully informed about what lies ahead for them, if not immediately than very soon after the diagnosis. Providing such AD information and resources can empower patients and caregivers.  

The handout should review symptoms, stages of the disease, medication and treatments, and refer patients and caregivers to helpful support groups, internet sites, and books for additional information. It is in the first few weeks and months after initial diagnosis when patients and caregivers have the most questions, fears and anxieties that can be somewhat resolved with access to more information. This is also the time period when AD patients and caregivers have the most need to locate support groups to help them deal with what is currently happening, as well as to prepare themselves for the future. If there are no local support groups, then doctors should speak with leaders of their local or state branches of the Alzheimer’s Association and/or the Alzheimer’s Foundation to ask them to start such groups. Doctors need to recognize that support groups can be a major component of the treatment protocol after an AD diagnosis. Meeting regularly in support groups with others in similar circumstances can be very empowering and comforting to both patient and caregiver. Even though each AD patient and caregiver may be in somewhat different boats, all are paddling in the same lake and can learn so much from others in similar situations.

The bottom line is that doctors must do a better job of communicating with their AD patients and caregivers. The goal should be to avoid an often heard remark in support groups: “l wish someone had told me about that when my spouse was still in the earliest stages so I could have prepared myself better.” Should AD patients and caregivers not wish to avail themselves of these information resources, choosing to rely solely upon their doctors for information, fine … that is their choice. But information is empowering … and for many patients and caregivers, having ready access to more information between doctor visits is extremely helpful and reassuring.

 

Originally titled, "Empowering Alzheimer's Patients and Caregivers." Published in Dementia, April, 2013, Vol. 12, No. 2, pp. 155-156. Access at: http://dem.sagepub.com/content/12/2/155.full.pdf+html