Living with Alzheimer’s

By Julie Gregory, Chief Health Liaison for Apollo Health

We always focus on how to reverse cognitive decline, but it’s equally important to discuss how to live with Alzheimer’s from both the participants’ and care partners’ perspectives. Many people come to the program in varying stages of the disease process while they concurrently begin applying the protocol. It’s vital to acknowledge the struggle that they and their families experience while also providing tips on how to make life a little bit easier on the path toward healing.

The Participants’ Perspective

Alzheimer’s affects everyone in a unique way, but there are some common experiences that affect many. For those who are aware of their cognitive changes, it can be very frightening to recognize that you are having trouble remembering and are otherwise struggling with your cognition. Those who are less aware may experience the loss of cognitive abilities by expressing frustration or even anger. See some helpful strategies below to navigate life with Alzheimer’s while also implementing the protocol.

• Rely on routine. One of the most helpful strategies is to create a daily schedule for activities like waking up, brushing your teeth, showering, getting dressed, eating, doing household chores, and more. By engaging in the same daily schedule, you know what to expect, and you don’t have to rely on memory when deciding what to do next. When you’re starting, you may want to write your schedule down until it becomes a habit. See The Power of Routine for more tips on how to get started.

• Have a plan for when you forget. We all know that scary feeling when you can’t remember something you know you should know. The very act of forgetting can cause anyone to become upset and even lead to a feeling of panic. Sometimes, by just allowing yourself a moment of grace, stopping, and taking a deep breath, you can create a sense of calm, which in turn may allow your lost thought to come back. I’ve seen my mother transition to using this technique very effectively. In the past, I’ve witnessed her almost have a full-blown panic attack at the grocery store because she couldn’t remember what she wanted to purchase. There was nothing I could do to calm her down. I gently encouraged her to just browse the aisles until something jogged her memory, but she wasn’t having any part of that. Indeed, once she began to panic, it was very difficult for her to remember anything. I actually held up the strawberries she wanted to purchase, and she angrily said, “No!” However, more recently, I witnessed her handle a similar situation very differently. She lost her train of thought in the middle of a story. Instead of becoming frustrated (per her usual), she paused, shut her eyes, then said, “There it is!” and continued on.

• Use Humor. While living with dementia is often difficult, there can be funny moments. It’s OK to lean into them and enjoy a good chuckle. In a safe and loving environment, self-deprecating humor can even be a way of coping with your cognitive shortcomings. Making these moments humorous reminds others that we all share weaknesses. Research reveals that there is tremendous value in laughing. It not only releases feel-good chemicals like endorphins, but it also enhances your immune system and triggers your nervous system to relax. Used therapeutically, humor can help to create a bond and a sense of inclusion between people.

• Create a memory journal. With dementia, there may be regular things that you struggle to remember. Sometimes it’s the names of your friends, caregivers or even family members. Other times it’s how to use your TV remote, iPad, or phone. Create a journal that can become a cheat sheet just for you. Use photos or descriptions of the person you’re struggling to remember, along with their name and any other relevant information — maybe their spouse’s name, their children’s names, their birthday, phone number, and anything else you need to reference. Consider writing down simple step-by-step instructions for your TV remote, iPad, phone, or anything else you’re struggling to remember. Refer back to your memory journal as needed. Consider working with a speech and language pathologist with training in cognitive techniques who can help you with your memory journal. They can also teach a variety of techniques, including repetition, association, visual imagery, mnemonic devices, and more,to help strengthen and improve cognitive function, which can be very helpful while concurrently using the protocol to address the root causes of your cognitive decline.

• Build a team. Many of us, especially as we age, are fiercely proud of our independence. When living with cognitive deficits, it sometimes becomes necessary to rely on others to help care for you and to help you implement the protocol. This is not a sign of weakness but rather a sign of strength. By allowing others to help, you have the ability to maintain your current level of independence and even regain lost skills. For the first time in history, we are living in the age of treatable Alzheimer’s disease, but it’s going to require some effort (including dietary and lifestyle changes) on your part. Your team will include a ReCODE 2.0 certified doctor who can help you identify and address all of the contributors to your cognitive decline, but it also may include a health coach and/or a nutrition professional who can help you implement your doctor’s plan and the Bredesen Seven (B7) lifestyle strategies. Additionally, Apollo Health offers a variety of education and support groups, a monthly Town Hall where you can get your questions answered by Dr. Bredesen, as well as an online forum for peer support and help from our health coach moderators.

The Care Partner’s Perspective

Thanks to Dr. Bredesen’s groundbreaking work — for the first time ever — it is possible to heal from Alzheimer’s disease. You are changing medical history by helping your loved one recover. However, there’s a huge emotional toll that comes with caring for those with the disease, and the added stress of concurrently trying to implement the protocol can make a difficult journey even more challenging. The great news is that there can be tremendous payoffs from using this life-saving approach. Depending upon how early you start the program, you can expect a range of results spanning from a full recovery to transformative quality-of-life improvements that can help your loved one move toward independence. Given the enormity and importance of the role of caregiving, it is vital to also practice self-care as outlined in Our Overlooked Heroes. See some helpful strategies below to help your loved one navigate life with Alzheimer’s while also implementing the protocol.

• Facilitate a B7 routine. Above I discussed the importance of establishing a routine for your loved one with cognitive decline. A routine helps them gain a sense of self-control by engaging in the same daily rituals every day. They know what to expect, which removes choices that can easily become obstacles for those with cognitive decline. Initially, that routine will include self-care tasks (like bathing, teeth brushing, etc.) and other activities of daily living (getting dressed, eating, etc.)  Your role as their care partner is to slowly fold in protocol tasks using the B7, which lists the foundational strategies of the protocol in order of importance, as inspiration. Starting with nutrition, consider slowly changing their diet to more closely resemble KetoFLEX 12/3 without a dramatic announcement that they will begin a new diet. Begin by using healthy swaps for foods they rely on. For instance, if they use sugar in their coffee consider switching to stevia or allulose. Next, you may want to move on to exercise by adding more movement throughout the day that may lead to a daily walk. By very slowly going around the B7 wheel, you can use the power of routine to reinvent their current schedule to one that incorporates the core principles of the protocol. This helps them feel acknowledged and less alone in their health journey.

• Be a role model. This one is key. You are unlikely to be successful in getting your loved one to begin incorporating healthy lifestyle strategies if you just tell them what to do. Instead, consider role modeling the behaviors that you want them to add to their daily schedule. For instance, instead of telling my mom that she really needs to exercise more, I might say, “Hey mom, let’s take a walk. We’re both getting older, and we really need to take better care of ourselves.” This reminds her that we’re taking this health journey together as a team. By pulling her along, I’ve been able to inspire her to try her best. In turn, her perseverance and improved cognition inspire me. She even openly acknowledges that the more effort she puts into the protocol, the better she feels. See It’s About Pulling Not Pushing for more tips on how to apply this strategy.

• Use laughter. Every time I interact with my mother, whether by phone or an in-person visit, I make it my number one goal to try to get her to laugh. Since her hemorrhagic stroke (see CAA: Notes from the Frontlines) she’s become uncharacteristically anxious, but when I can get her to laugh, I literally see her fear melt away enabling her to relax and connect with me in a deeper way. We laugh at anything and everything. Sometimes we giggle when sharing a funny memory, but our favorite thing to do is to laugh at something silly one of us has done.

• Stay calm. This one can be difficult especially when your loved one becomes frustrated, panicked, or even aggressive. Engaging with them, however, is very likely to make things worse. Often removing them from a frustrating situation or redirecting them to a new activity can bring on a sense of calm. By the same token, we as care partners need to remain calm when encouraging them to use the protocol. Sometimes, because of our great love and concern for them, it’s difficult not to become frantic ourselves when we are trying to help them, especially when they are resisting. Unfortunately, they are able to pick up on our urgency which can in turn lead to more stress, exacerbating the situation. Remember, self-care, which may include professional counseling, is vital for us care partners better enabling us to remain calm to be our best for our loved ones.  

• Avoid conflict. Very often our loved ones’ warped sense of reality can lead to tension or outright conflict. I recently dropped off a box to store Christmas ornaments at my mom’s apartment so she could begin taking down the ones that were hanging low on her tree. Two days later she complained that she’d been looking at that ornament storage box for months now. While I was very tempted to remind her that it had only been two days, I realized it wasn’t worth it. Instead, I said, “You’re really frustrated that I haven’t picked that box up yet.” Was it important for me to be right? Absolutely not, but it was important for my mother to feel validated. When possible, I try to sidestep conflict by simply repeating and sometimes reframing her concerns without correcting her. This technique helps her to stay in a calmer frame of mind where she’s more likely to stick to the protocol