Updated: Jun 7
A Dementia diagnosis can be confusing and challenging, but individuals and families can feel empowered as they navigate their next steps. Board-certified chiropractic neurologist
1. Assemble a Care Team
Once you’ve been given a proper diagnosis and a second opinion, an organized treatment plan should be on the agenda. Planning will most likely include a team of various medical specialists, your primary care physician, and your loved ones. Sullivan believes that individuals need to partner with their brain health provider so that that person can keep them up to date on clinical trials and programming that could be helpful. She believes that an extension of that plan should be a neuropsychologist. However, she’s aware that there are many more patients than neuropsychologists in the U.S. today. Nonetheless, here’s a resource to start the search.
According to Sullivan, “Your neuropsychologist is your best partner for figuring out a whole-person strategy. We spend so much time getting the right diagnosis, but we must remember that this is just one part of the person's identity.” She explains that it’s important to “zoom out” and help the person living with Dementia process their diagnosis and any changes they are going through.
Sullivan says that the individual themselves need to be a part of the planning, and early measures should include a living will so that loved ones won’t need to scramble or argue about the next stages. “I think patients should start documenting their preferences for future care. Dementia is a cognitive disorder, and while discussing living wills is tough, it’s important for individuals to be able to advocate for themselves while they are still able.”
2. Take Advantage of Early Interventions
Trayford is the founder of APEX Brain Centers, Asheville, NC. He suggests that individuals could start a regiment of brain-healthy lifestyle changes to help slow cognitive decline. “You may not reverse a progressive pathology in the brain, but you might increase your chances of doing more for longer, whatever ‘more’ means to you and your quality of life.” Trayford continues, “The more confident we are on two feet, the more confident we are in our psychological, cognitive, and emotional processes.”
Lifestyle changes should also be incorporated. He says, “These lifestyle changes could include anti-inflammatory diets, higher fat diets, or lower sugar diets for better brain function. Keeping your blood sugar in check if you have diabetes.”
He also recommends that individuals keep moving - whether that means taking a walk, finding a program like Silver Sneakers®, or participating in a virtual chair yoga session. “It’s all about the important brain-body connection, and we deal with balance and cognition. Getting in tune with your physical body and if you can handle it, cardiovascular exercise needs to be a regular part of the regiment.”
Sullivan says, “We're really moving towards an early and more accurate diagnosis of Dementia.” She recommends that her patients enroll in research studies early on, which might make a difference, but more importantly, doing so can help her patients feel like they are part of future treatment. There are many trials nationwide, and a great way to start looking is to use the Society's Dementia Answers® directory.
3. Live Your Life
Sullivan says that when teams launch into a treatment plan, it’s easy to forget the patient’s humanness. “I have learned the importance of just being quiet for a little bit and letting the diagnosis sit there for a few minutes and giving people time and space to hear it and to process it,” she explains. She also expresses that patients don’t want to feel forgotten, “That ‘D word’ comes with stereotypes. Instead of letting the diagnosis color everything, remember that Dementia doesn’t define you.”
“I really like that the Dementia Society of America® is working to represent all types of Dementia,” says Sullivan. When the stress of the initial diagnosis lessens, Sullivan says that gratitude tends to kick in. “Right now, you’re grateful to be alive and healthy, right? So I encourage people to pursue new passions, whether painting, playing music, or bird watching.”
Contributing authors' opinions are not necessarily those of the Dementia Society, Inc. We do not endorse nor guarantee products, comments, suggestions, links, or other forms of the content contained within blog posts that have been provided to us with permission, paid or otherwise. Dementia Society does not provide medical advice. Please consult your doctor. www.DementiaSociety.org
Tonya Russell is a South Jersey-based writer who specializes in health and wellness. Her words can be found in the New York Times, Washington Post, Forbes, and Prevention.