Some of our patients ask why they need to come in for clinical follow-up appointments. After all, there is no cure for dementia yet, so why take time out of a busy schedule to come back? To ensure continuity of care and proper management of this rare disease, it is imperative that patients return for their follow-up appointments. Below, we list the top 7 reasons it’s crucial to keep your follow-up appointments with your neurologist.
Accurate diagnosis. While our physicians are international experts in evaluating and diagnosing dementia, the progressive nature of the illness means that diagnoses can become more specific over time. Different diagnoses call for different ways to manage symptoms (e.g. some medications may be more effective than others). Additionally, clinical trials often have narrow guidelines as to what groups of people can be enrolled. The more specific your doctor can be with your diagnosis the more likely you can be a candidate for a trial if any are available.
Imaging review. Your neurologist’s office can call you to review the results of MRI or PET scans over the phone. However, it can be difficult to understand results without seeing the scan as you review it. At your follow-up appointment your neurologist can bring up the images to show you and go through them together at your own pace. Your neurologist has the unique expertise to explain complicated terms for brain anatomy that are commonly used in explaining imaging results.
Management and continuity of care. While your primary care doctor should still be your first call for any new health issues, your neurologist is the best person to help you manage symptoms of dementia as the illness progresses. Because they have the most information about where patients started cognitively they can better evaluate any changes in their patients. They can determine whether changes are related to the dementia or could be a sign of another underlying medical condition, such as a urinary tract infection, that could need treatment. Regular assessments also help us to manage dementia by anticipating problems and starting new treatments before they worsen.
Prognosis. Navigating life with dementia is challenging for patients and families. Having a prognosis (the likely course of the disease and what to expect) allows families to plan for the future. Every person’s experience with dementia is different. Without regular evaluations your doctor will not be able to give you very accurate information about what the future might hold or what steps your family should consider taking.
Treatment options and medication changes. Because dementia is a progressive illness, treatment needs to be re-evaluated regularly to ensure it is still helpful. Some medications for memory are less effective over time and may need to be increased or discontinued. People with dementia may develop problems with mood or agitation which can be addressed with new medications. Regular follow-ups ensure that your neurologist can identify these issues and prescribe treatment to reduce stress on your family. Finally, therapies like occupational therapy or physical therapy may be recommended by your neurologist at follow-up appointments. These individualized care approaches are less accessible to patients who are not able to keep their follow-up appointments.
Safety. At your follow-up appointment, your neurologist will discuss everyday activities and how they are going for you. It’s crucial to have this conversation regularly so that we can keep you safe. For example, driving can become a safety hazard for people with dementia, and your neurologist may want you to get a driver’s evaluation. Most people with dementia go on to develop issues with controlling the muscles of the throat. This can lead to problems with swallowing, causing food to “go down the wrong pipe,” and can lead to a potentially life-threatening condition called aspiration pneumonia. At your follow-up appointment your neurologist will evaluate your movement and can refer you for a swallowing study if there are concerns for your safety. Other safety concerns include the risk of dangerous falls. A fall could lead to a hospital stay, which can be especially disorienting and distressing to a person with dementia, leading to a worsening of symptoms. Your neurologist is often among the first to notice movement problems that can be addressed by starting physical therapy. Finally, your follow-up neurology appointment is a good time to bring up concerns about changes in mood. Some people with dementia may have aggressive episodes and act out toward caretakers, sometimes putting them in danger, typically due to feelings of confusion and anxiety. This can often occur during bathing or new situations. At your follow-up, your neurologist may prescribe medications to reduce agitation and help families stay in better harmony.
Advanced Care Planning. Your neurologist can help you to plan financially, legally and emotionally throughout your illness. At follow-up appointments you’ll discuss goals for your care and quality of life. As dementia progresses, your loved one may no longer be able to manage finances or legal discussions independently. Your neurologist can provide insight on how to navigate these changes or connect you with our social work team. Palliative care may also be discussed for those whose loved ones want them to be as comfortable as possible throughout the disease process. Palliative care teams often partner closely with your primary doctor and neurologist to provide the best health care in the comfort and familiarity of your own home. The palliative care team usually includes a registered nurse, a social worker, physical and occupational therapists, and home health aides.
Your neurologist is a key partner in your dementia care plan. Keeping regular follow-up appointments ensures that you can get the most out of your doctor and access the latest treatment options. Follow-up appointments help doctors to address problems before they become emergencies so that they can keep patients and families as safe as possible.
We at the Penn FTD Center want to develop a relationship with our patients, so we can personalize their care, head off problems early, and improve their quality of life.