Once someone gets a diagnosis of some type of dementia, family caregivers struggle with the next steps. Families will ask me if it is “worth” the effort to drive to a Memory Disorders Clinic several hours away when they can see their local neurologist. This is a good question. Here are some points to consider when trying to make that decision:
- A neurologist who is part of an academic medical center may have resources, such as access to clinical trials or research studies, and can refer you to these opportunities (if that is something important to you and your family member).
- On the other hand, some Memory Disorders Clinics serve more as access points to research and clinical studies, and may not necessarily offer the type of support and care family caregivers want and need.
- Does the practice have nurse practitioners and/or nurse navigators to help you with behavioral and other challenges that you may face as the disease gets worse?
- How well does the practice communicate with other practices, such as your primary care provider?
- How accessible are the providers? Are telephone calls returned promptly? Can you reach out through a portal (and receive responses)?
First, if you have any concerns that the neurologist is not taking your concerns seriously, or if you are concerned that a diagnosis was made with an incomplete work-up, GET ANOTHER OPINION.
In the majority of cases, your family member may see the neurologist once for a diagnosis and confirmation, and then every three to six months while he or she is receiving medications such as donepezil (Aricept), memantine (Namenda), or rivastigmine (Exelon).
Most likely, you will be referred back to the primary care provider for management unless the medications need to be adjusted. However, if you can get into a practice that specializes in dementia care, you may have a much different experience. Ideally, you should be receiving information and support that helps you to understand the dementia-related behaviors that you are seeing.
I am a nurse practitioner in a clinic that specializes in dementia identification and care. I am part of a team of neurologists and nurse practitioners who focus exclusively on helping people and their family caregivers with dementia—especially Alzheimer’s Disease.
New patients are seen initially by one of the neurologists and the appointment may take up to 2 hours. At the end of the appointment, the neurologist provides diagnosis most strongly supported by the clinical and imaging findings. The individual is asked to return and see the nurse practitioner.
The first time I walked into the examination room, the family caregiver looked right at me and said, “I didn’t drive all the way here to see a damn nurse.” I smiled and did my thing.
What the caregiver did not know, probably because she had never experienced it, was that my focus is just as much on the caregiver as on the person with dementia. To be honest, I spend more time interacting with the family caregiver than I do with the person with dementia.
I ask about caregiver burden or overload, obtain social work referrals, recommend respite care, write letters to attorneys, and do whatever I can to help the family caregiver.
Family caregivers are creative and often have the answer deep inside. I simply sit with them and brainstorm until we find a solution that works for everybody. The family caregiver is the one who needs the support, the education, the warm fuzzies, the box of tissues, the shoulder to lean on, the ear to vent to, and at the end of the visit, a hug and a whispered, “You are amazing.”
Let’s face it, much of the behaviors cannot be “fixed” with a pill anyway, although I do address underlying depression and pain pharmacologically.
When patients and their families come to our neurology practice, they can expect to have their loved one’s memory checked, and questions asked about behaviors that they, as caregivers, are facing.
Much of what I do involves explanation and education. For example, I will perform memory testing and use the findings to help family members change the way they talk and act with their loved one so that the caregiver is less frustrated. When the patient is unable to tell me the three words (we use tiger, hope, daisy), or only does half of a 2-step command, I turn this clinical finding into a teaching opportunity. Family members “get it” immediately because I am able to provide the “why behind the what.”
If I explain the “what” (the brain that is responsible for short term memory is shrinking), the family member can handle the “why” as in, “Why does she ask me the same question 300 times?”
I also focus on the positives as part of my interaction with families and their caregivers.
I’m a strong believer in playing to the person with dementia’s strengths, and believe that this is empowering for both the person with dementia and their family caregivers.
One family, for example, was having trouble with finding meaningful activities for their mom. I suggested having the grandkids sit with Mom and go through the shoeboxes of family photographs that needed cataloguing. Her long-term memory was in great form; she could identify people in the pictures and share family history with the next generation.
I also suggested that the family take advantage of something called “procedural memory.” That is the memory surrounding an activity that people do on a regular and consistent basis. This patient was a wonderful cook and her daughters were trying to save family recipes that were not written down. I suggested putting the ingredients for a cake and the measuring cup and bowls on the counter, then standing by and letting Grandmom do her thing.
Sure enough, she started making one of her signature breads. One of the grandchildren recorded the entire event on an iPad. The family now has the recipe and a digital recording of a treasured event.
I cannot accomplish everything I want to teach in one appointment, so I schedule return visits every 3 months in the beginning, then every 6 months afterwards.
The other nurse practitioners and I have developed extensive educational handouts, including a link to a video I made a few years ago as part of my research study on reducing care-resistant behavior during mouth care. We update the materials regularly. Primary care providers and geriatricians in our health system have access to our materials because the information is part of the electronic health record system.
As the dementia progresses, the effort to get the person to the clinic at some point may outweigh the benefits of coming to the clinic. We have helped the family caregivers respond to the behaviors that were previously a problem. Or, the behaviors have resolved on their own.
Sometimes the caregiver brings up the question about whether or not they should come back.
I suggest they make the appointment for follow-up and, if everything is good and they are facing no new problems, cancel it. Sometimes I ask the caregiver how they feel about continuing the visits. As we talk, I acknowledge that the dementia has reached a point where there is really nothing more that our practice can do neurologically for the person, but we want the caregiver to still feel connected to us if we are needed at a future point in time.
Hopefully, the information I shared here will help you to seek out practices that offer care beyond prescriptions.
***Portions of this post was originally published on The Alzheimer’s Reading Room***