Navigating The Medical Maze: Practical Tips
For navigating medical care in the early stages of your dementia awareness, consider the following steps:
Seek Professional Evaluation
Schedule an appointment with your loved one’s primary care physician for initial screening and discussion of symptoms.
Request comprehensive assessments to evaluate cognitive functions and rule out other potential causes. These include:
Neuropsychological testing
Blood tests to rule out other conditions
Brain imaging (CT or MRI scans)
Obtain referrals to specialists such as neurologists, geriatricians, and/ or psychiatrists for complex cases.
Build a Healthcare Team
Establish relationships with the various healthcare professionals that are most important for your loved one’s care. It is important to know that they may or may not be dementia specialists. These may be professionals that are part of one or multiple healthcare systems, depending on where your loved one lives. They may also be visiting professionals if your loved one is already living in a retirement community. They could include:
Primary care physicians
Neurologists
Geriatricians
Neuropsychologists
Psychiatrists specializing in elder care
Social workers
Occupational therapists
Physical therapists
Speech therapists (for language difficulties)
Nutritionists
Build a Care Team
You may have stepped up to take the primary care role but, as in life, it is impossible for you to do everything by yourself. In addition to the team of healthcare professionals that will support you and your loved one, your family and friends will play an important role as well. Successful care teams divide up the workload along skillsets and/or preferences (e.g. medical, financial, emotional) and they provide support to each other as well as respite care for the primary caregiver when needed.
Coordinate Care
Accompany your loved one to all medical appointments to provide support, learn, and begin to track key information (vital signs, weight, test results). This is a big change for your loved one - to have a “babysitter” join them in appointments that used to be private. Discussing this with them, asking their permission, and ultimately letting them know that you will attend with them and be there as their advocate is an important part of this process. My girlfriend recently shared that for her mom there was a sense of relief, of having someone “on her side” with her.
Suggest centralizing where all medical information is kept, along with medical insurance (policy, group #, contact info), social security number, pharmacy (name, address, phone), and all doctors’ specialities and contact information. That way others on the care team can access it when needed, not just you.
If your loved one is part of a healthcare system that has a patient portal, establishing access to that and keeping logins and password information centrally is also helpful.
Ask your loved one’s doctors for a written care plan and take notes during visits or have another family member do that.
Explore options for home visits or telehealth appointments if mobility is an issue so that your loved one can get the care they need from the different types of doctors that they have, such as primary care, specialists, dental, and eye care.
Understanding your loved one’s medical insurance as soon as possible is also important: type (private, government), scope (what is / not covered), coverage amounts (co-insurance / co-pay / deductibles)
Utilize Available Resources
These are some of the many that exist:
Connect with local Alzheimer's Association chapters for practical support, helplines, and caregiver training. The Alzheimer’s Association provides a variety of services, including:
Educational programs
Support groups
Caregiver training
Helplines for immediate assistance
Information on clinical trials
Explore online support groups through social media channels such as FaceBook, Reddit, and others.
Investigate community-based support services and resources recommended by healthcare providers. A great source of information and support could also come from your local community organizations such as churches, adult day-care services, and online forums or communities.
Consider working with a geriatric care manager to help navigate available services and coordinate care. Elder care lawyers, retirement communities, and financial planners often have referrals that they can provide, whether or not you are using them actively.
Plan for the Future
Engage in early discussions about legal, financial, and long-term care planning while your loved one can still participate in decision-making. We cover these in more detail in a downloadable guide, but those can include:
Advance directives
Power of attorney
Long-term care options
Research potential clinical trials, existing or emerging treatments that may help manage symptoms. Scientific research is constantly evolving with new advancements on the horizon. The Alzheimer’s Association recently shared that there are new Appropriate Use Criteria (AUC) that could aid primary care physicians, neurologists, and other clinicians to accurately diagnose early Alzheimer’s, and potentially other dementias.
Discuss clinical trials as an option (pros & cons), as well as medication options, and their potential benefits and side effects, with your loved one’s healthcare team. Each team member will have an opinion that is based on their knowledge and experience. While they can’t tell you what to do, with enough input from a variety of team members and your own research, you will have the information that can help you and your family make the best-informed decision for and with your loved one.
Maintain Open Communication
Keep all healthcare and care team members informed about changes in symptoms, behaviors, and/or medications. These will change over time. Keep track of the names of the medications your loved one is taking (brand and generic name), as well as the dosage and frequency for each one.
Tracking these medications, doctor visit outcomes, treatment plans, etc.. in a central location will make communication easier as the journey progresses. I used the “Notes” feature on my phone because as an only-child, only I needed to access the details. That doesn’t work when you have a more robust care team. There are tools like the kinkeeper.app, Google workspace, and others that can be considered for what you, your loved one, and their care team might use most effectively.
Don't hesitate to ask questions or seek clarification on medical advice or treatment options.
You are your loved one’s advocate. Together, with your loved one, you are “living the movie” and each healthcare team member is getting “postcards”. So the more questions you ask and the more information you share, the better your decision making will become.
Encourage open dialogue between your loved one and their healthcare providers to ensure their wishes are respected, and so they feel included in the process. Encourage the healthcare team to speak directly to your loved one about their own health, even if you’re in the room. When you have dementia you lose a lot of control over your own life and these little things help you to retain your dignity and engagement.
Holistic Care Options
Discuss with your loved one lifestyle modifications that may help, such as:
Diet changes
Exercise routines
Cognitive stimulation activities
Explore non-pharmacological interventions like music therapy, pet therapy or art therapy.
Address sleep issues and develop good sleep hygiene practices.
💡There are many wonderful books about the importance of these holistic care options. Because I was going through menopause at the same time, Dr. Sanjay Gupta’s “Keep Sharp” was that book for me. It helped me to think differently about these options and to incorporate them into my life as well.
Congratulations! You are building a robust approach to navigating and tracking your loved one’s medical situation that will support you both throughout the journey. The sooner you take these steps the easier it will be for you to effectively navigate the complex medical landscape of early-stage dementia, ensuring your loved one receives comprehensive care and support, while also preparing for future challenges.
You're not alone in this journey. Together, we can face the challenges of dementia with compassion, understanding, and hope. Glya Health was started with a commitment to being a “friend in your pocket”, for the duration of this journey. We are honored to share it with you.
In solidarity,
Kate
Sources:
NIH - Living Alone with Early Stage Dementia
Help Guide - non profit
