Ask the Experts about Alzheimer's

• "Even if you expect a diagnosis, it can still take time to adjust. Getting the diagnosis is the first step to moving on with your life."
• "For me, getting a diagnosis was a relief. Now, I had a reason for the challenges I was having."
• "It was intimidating to go see a neurologist, but I’m glad I finally agreed to do it. The testing was frustrating, but it helped me understand the extent of my challenges. Even though I didn’t enjoy the process, I think it prepared me to hear my diagnosis."
• "I never saw a neurologist to get my diagnosis. My general doctor did some tests in her office and gave me the diagnosis of Alzheimer’s. She also gave me some suggestions for programs and resources for people with Alzheimer’s. It was helpful to have someone I knew guiding me in the process."

Key Takeaways:

• Denying challenges won’t make them go away. Yes, there is a possibility the changes you are experiencing could be Alzheimer’s or another dementia. It is also possible there is another cause. Regardless, before you can make a plan to move forward it’s important to know what you’re dealing with.
• Take it a step at a time. Finding the reason for memory change can take time. Doctors may want to rule out other possible issues that could impact memory, or they may want to do some initial testing, then wait a while and re-test to see if there is a change.

• "Fearing the diagnosis was worse than the diagnosis itself. When I received my diagnosis, it’s like a weight was lifted. I finally knew what I was dealing with."
• "Before I got my diagnosis, I was beating myself up. I was making mistakes, and I felt frustrated and embarrassed. Now I know it wasn’t my fault, and I am much kinder to myself."
• "In a way, the diagnosis made my life simpler. I decided to focus on the things that really matter to me, and that feels good."
• "The best treatment for me is staying busy. It doesn’t help me to stay home and worry about things I can’t change. Now that I know I have Alzheimer’s, I keep myself busy with things I enjoy. If I occupy my mind with things that make me happy, I don’t dwell on the diagnosis."
• "It might sound crazy, but I have a sense of contentment with where I am. Getting a diagnosis has helped me put into perspective what’s really important in life. To me that’s my family, my faith, and my friends."

Key Takeaways:

• Take baby steps. If you’re not ready to call your doctor, talk to someone you trust and who will support your proactive mindset.
• Ignoring your challenges increases stress, and stress makes everything more difficult.
• Getting a diagnosis can be the first step towards navigating beyond worry and stress to finding ways to continue engaging in life.

• "Give yourself time to adjust to the news yourself before sharing it."
• "You don’t have to tell the whole world at once; think about telling those closest to you first."
• "Don’t wait forever to tell people. Hiding it is a form of denial, and people can’t be there for you if they don’t know what’s going on."
• "It’s important to realize some friends may not know how to be there for you and may pull away, but others may surprise you with how they step right in to support you."
• "Not telling people added to the stress. I felt like a weight was lifted when we finally told our friends."

Key Takeaways:

• You don’t have to tell others right away, but don’t add stress by keeping it a secret for too long.
• Make a plan together for how to share the information – by letter, email, or personal conversation.
• Start building your support team by telling those closest to you first.

• Recognize that some people’s reactions may not be helpful. Most people mean well but may not know what to say or do.
• You are not responsible for anyone else’s feelings or reactions about your diagnosis. It’s OK to be direct about what you need. Let others know that the most important thing they can do is support and be there for you.

• Even if your loved one is not ready to tell others in your circle, you still need support.
• Consider finding a support group for caregivers to connect to a community dealing with similar challenges.

• "I chose to quit reading information about Alzheimer’s because most of what I read was negative. I know there is a reality to this diagnosis, but I choose to continue to participate in the activities that give me joy today rather than worry about what might happen tomorrow."
• "I don’t want to be defined by the diagnosis. I’m not any different as a person; I can still do things I enjoy. Some things may be harder than before, but if I slow down and focus on one thing at a time, I feel better."
• "I’m choosing to live my life, not waiting to die. The most important thing we can do for others with a diagnosis is to shine a light that we can still live well with this disease.”
• "I think meditation helps me more than anything. When I’m stressed, I stop and take a few deep breaths. It calms me down. I don’t beat up on myself anymore."

Key Takeaways:

• Engaging with people and activities that bring you joy lifts mood, increases quality of life, and may decrease anxiety.

• Make a decision to shift away from negative thinking, which reinforces what you can no longer do. Instead, be a possibility thinker and focus on things you can still do (perhaps with some modification).

• "I don’t have to wait for a new medicine. Every day I do things to help my brain – I go for a walk, I have lunch with a friend. These little things can make a big difference."
• "I think the best thing people can do is exercise, eat well, think nice thoughts, keep your brain engaged."
• "Medications can’t impact what I choose to think about. I can get depressed really quickly if I’m not careful. The best medicine for me is being with friends and focusing on life. Going to a ball game, sitting in the sunshine, and being engaged in normal activities rather than worrying about tomorrow."

Key Takeaways:

• In addition to prescribing medications to treat memory, doctors also help manage other health issues which can benefit overall brain function.

• Healthy lifestyle habits, community involvement and social engagement benefit the brain whether or not you have a diagnosis.

• Make time for activities that engage you with the people and activities that matter most to you.

• "I was worried about being a burden. I didn’t want my wife to have to do everything around the house. So we sat down and came up with a list of tasks I can be responsible for and wrote them down. Sometimes I have to ask for a reminder about where something is, but I like being able to contribute around the house."
• "Sometimes people think as soon as you get your diagnosis, you suddenly can’t do anything for yourself anymore. But that’s just not true. Things get harder as the disease progresses, but there’s still a lot you can do. The key for me was good communication with my wife. Every few months, we sit down and talk about what things are getting too hard. Then we try to come up with a solution together."
• "Don’t give up and stare at the TV all day. You might not be able to do everything you once could. You might need help with some things, or you might need to change how you do some things. But that’s still better than not doing anything at all."
• "I have my morning routine written down and taped to my bathroom mirror. I see it every day when I get up, and it helps me remember what I need to do next. It feels good knowing I can still do things for myself with a little reminder."
• "I have always done yard work but it was becoming difficult to do everything at once. To keep me going, I decided to spread it out over a few days. One day I mow, the next day I edge, and so on. I still get the job done but I don’t stress myself trying to do it all at once."

Key Takeaways:

• Rethink rather than resist. This diagnosis does not mean you can no longer do anything for yourself. Be a flexible thinker, and consider ways to modify activities that have become challenging rather than giving them up altogether.
• Use teamwork to find solutions. Work with your care partner to maintain open communication. Your care partner needs to know what is important to you, so share your desires and worries with them. Also, be willing to listen to their concerns and opinions. You are both adjusting to a new normal, so give yourselves time to find solutions that work for you.
• Keep safety first, but don’t let fear stop you. Safety is an important consideration in maintaining independence. This requires honest conversations and a willingness to be flexible as things change. Choose positivity over fear – if you try something that doesn’t work out, learn from that experience with your care partner and make adjustments.

• "Getting the diagnosis was actually a relief to both of us. Now we had a reason for the challenges my husband was having."
• "I was in denial about my husband’s diagnosis. Seeing the challenges he had on the assessment and having a doctor speak frankly with me was hard, but helpful. Looking back, I wish I could have accepted reality more quickly. We could have saved a lot of heartache."
• "My wife received an early diagnosis because we were both participating in a study. They saw changes in the annual testing. We feel fortunate to have found out so quickly."
• "My husband has always been proactive. When he started noticing changes in his memory, he brought it up to his doctor pretty quickly. His doctor asked some questions and did some basic cognitive testing. He came back to us with a diagnosis of Alzheimer’s, which made sense to us given the challenges my husband was having. The doctor asked if we wanted a referral to a specialist, but we opted out because my husband didn’t want to go through more testing."
• "Going to a neurologist was a big deal. They did lots of testing, like an MRI, blood tests, and cognitive testing. The cognitive tests were very frustrating for my husband but seemed to prepare him for the diagnosis by helping him see areas of challenge more clearly. It brought us a step closer to being ready to hear the diagnosis."

Key Takeaways:

• Start the Conversation. If you have concerns about your spouse/family member’s memory but they have not mentioned it, gently and respectfully ask them about it. Encourage them to be proactive and seek answers. Some causes of memory difficulty can be successfully treated, but either way it’s helpful to pinpoint the cause.
• Take it a step at a time. Finding the reason for memory change can take time. Doctors may want to rule out other possible issues that could impact memory, such as depression or certain medications. They may want to do some initial tests, then wait and re-test after some time has passed to see if there is a change
• Make brain health a priority. This is a change in mindset from a focus on ‘what is wrong’ to ‘what is going on and what can I do about it’. Brain health is about prioritizing activities such as social relationships, exercise, and stress reduction.

• "As a caregiver to someone with dementia, how do I care for my own brain health?"
• "What words of wisdom do you offer other caregivers?"

• "I remember when my husband was first diagnosed, I was scared because I didn’t have any idea how he would progress and how long the course of the disease would be.  It is very hard not being able to know the future. My advice is to take care of financial and legal matters, then try not to worry about what will happen down the road. Focus on the joy you can find today."
• "Seek out the best neurologist you can find, one who will guide you and your loved one through all the stages. It is so wise to find someone you can talk to, who will prescribe the best medicines – they won't cure the disease but they can help the brain function as well as it can.  So many go down this path with doctors they don’t like or who don’t communicate well with them. You are your own best advocate. Go to every doctor’s appointment with a list of any questions or a summary of changes you’ve noticed. This will help your doctor to help you better."
• "Don't let fear keep you from enjoying life. While you can do so, go ahead and travel, visit with friends, run a 5K – whatever makes you feel alive. I had to keep reminding myself that even if my husband struggled during a trip or at a restaurant, it didn’t mean we had to stop doing those things. We just made adjustments for next time and kept living our lives. It’s important to keep doing these things as long as you can."

Key Takeaways:

• Life is not over with a diagnosis. Rather than worry about what might happen tomorrow, take care of the important stuff early so you can continue to live each day.

• Make a list of all the things that are cluttering your mind and rank them in order of priority. Then start on that list one thing at a time.
• Each day, set two priority tasks for yourself that will require your mental energy. Make sure these tasks can be accomplished in 30-45 minutes of focused time. Approaching your tasks in this manner helps you keep moving forward without getting overwhelmed by trying to do too much at once.
• Next, make a list of the people and activities that bring joy to your life. Be just as intentional to make time on your schedule for these parts of life as for the practical items on your to-do list.

• Having a plan is good for brain health. It’s more difficult to make decisions when you are stressed. You can support calm and clear thinking by planning ahead and making decisions early. Making a plan also minimizes worry so you can focus your attention on living life.
• It’s important for your brain health to find balance – educate yourself so you can make informed decisions, but don’t spend too long living in the future.

• "Give yourself time to adjust to the news yourself before sharing it."
• "You don’t have to tell the whole world at once; think about telling those closest to you first."
• "Don’t wait forever to tell people. Hiding it is a form of denial, and people can’t be there for you if they don’t know what’s going on."
• "It’s important to realize some friends may not know how to be there for you and may pull away, but others may surprise you with how they step right in to support you."
• "Not telling people added to the stress. I felt like a weight was lifted when we finally told our friends."

Key Takeaways:

• You don’t have to tell others right away, but don’t add stress by keeping it a secret for too long.
• Make a plan together for how to share the information – by letter, email, or personal conversation.
• Start building your support team by telling those closest to you first.

• Recognize that some people’s reactions may not be helpful. Most people mean well but may not know what to say or do.
• You are not responsible for anyone else’s feelings or reactions about your diagnosis. It’s OK to be direct about what you need. Let others know that the most important thing they can do is support and be there for you.

• Even if your loved one is not ready to tell others in your circle, you still need support.
• Consider finding a support group for caregivers to connect to a community dealing with similar challenges.

• "At first I was overwhelmed with thinking about the future. But then I realized, if I waste time worrying about what will happen next, I’m going to miss out on enjoying our time together."
• "It’s good to be realistic and make plans for the future. But don’t spend all your time there. Make a plan, but then come back to the present."
• "Focusing on what we might not be able to do someday is very limiting. We take one day at a time, focusing on what we can still do right now."
• "We talk about the things that are difficult and frustrating, and we make a plan together for how to handle them. We may need to do some things differently now, but we are still the same people we were before this diagnosis."

Key Takeaways:

• Activities and relationships that bring you joy also boost brain health by increasing quality of life and decreasing anxiety. Do your best to make time for these things in your own life. If necessary, ask a friend or family member to come spent time with your family member so you can get away to enjoy an activity you love.

• Make a decision to shift away from negative thinking, which reinforces the challenges. Instead, be a possibility thinker and find ways to continue doing the things you both enjoy, with modification when needed.

• Although people dealing with dementia have similar challenges, their paths may look very different. Remind yourself to focus on finding a positive path within your own journey.

• “I realized that when I try to do everything for him, both of us suffer. I become resentful and he feels like a child. Finding a balance between things I need to handle and things he can still do has helped us."
• "My husband loves to walk. Over time I became concerned about him getting lost, but it was important to him to be able to walk on his own. We decided to give technology a try. With his smart watch, he can go for a walk and I can easily check on him to see where he is. If he seems lost, we go get him and guide him home."
• "Before we have a doctor’s appointment, I sit down with my husband and ask him how things are going. I sometimes bring up situations to get his perspective. This time has turned out to be a meaningful conversation for us and helps make our time with the doctor more beneficial."
• "You have to give up some control. They may not do a task exactly how you think it should be done, but it’s important to let them try."

Key Takeaways:

• Ask questions. If you don’t know why your family member is acting differently, ask them. For example: “I noticed you left the room several times while the family was over. Why did you leave? Was it too noisy? How can I help?”
• Practice perspective-taking. For the person with Alzheimer’s, what used to be easy is now difficult. They look okay on the outside, so people often assume, "if it’s easy for me, it should be easy for them." Remember, they are not having difficulties on purpose. They are doing the best they can.
• Be a problem solver. Realistically, some challenges that come with dementia will not be solved, but they can be lessened. For example, if large gatherings are difficult, consider smaller groups, or have a signal if you want to leave early. If you notice that busy days increase stress, simplify your schedule. If your spouse enjoys doing a hobby that is too complex or dangerous, see if a family member or friend who also enjoys it can join them.
• Be flexible. Rather than resist change, be flexible. Make small adjustments over time and seek to work with the changes as they arise.

• "When my frustration is high, I know I’m not my best self. Sometimes I just need a moment to reset. As long as we are somewhere my spouse is safe, I step into another room and take a few minutes of silence. Taking a little break helps me think more clearly and react more thoughtfully."
• "After the diagnosis, my husband and I talked to a few of our closest friends. We worked out a rotating schedule for one of them to come over a couple times per week and take my husband to lunch or just sit and chat with him. That’s my time to do something for myself. I don’t do any chores! Sometimes I go for a long walk, find somewhere quiet to read a book, or meet up with friends for lunch. That special time recharges me and reminds me that I am important, too."
• "I’ve started a deep breathing mindfulness practice and it has made a world of difference for me. I never would have believed how much focusing on my breath for a few minutes a day could help keep my stress level in check."
• "The single most important thing I did to care for myself was to find a support group. Talking to other caregivers going through this diagnosis with their loved one gave me a place to feel heard and understood. Because I had new friends to discuss the challenges of caregiving with, I did not feel the need to discuss it as much with my other friends. It was nice to have the freedom to just be normal. That was good for my brain."
• "After the diagnosis I was very worried about what the diagnosis would mean for our financial well-being. I decided to be proactive. I contacted our financial advisor and scheduled an appointment to discuss the future. Now I have a plan and don’t have to worry."
• "One of the best things I did for my brain health after my husband’s diagnosis was to keep working. I know some people don’t have that option but that choice was a life saver for me. I think having something else that gives a sense of purpose is important.

• Start early to prioritize your own brain health in this journey.
• Make time for the things that recharge your batteries. Be willing to enlist help from friends/family to carve out time to yourself.
• Take your foot off the gas – allow yourself to rest.
• Whether you simply step into a quiet room for a 5-minute recharge or schedule time to take a walk in nature, recognize the importance of giving your brain a break several times a day.
• Be a possibility thinker – how can you tap into your resources to better support yourself?
• So often, friends and family want to help but don’t know how. Talk to them about what you need, and take a teamwork approach to getting those needs met. Help them realize the practical ways they can help such as offering a ride or cooking a meal.

Helpful Links:

• If you would like to prioritize your own brain health but don’t know where to start, consider joining The BrainHealth Project This online study is designed to help you monitor and improve key aspects of brain health with a personalized brain health plan.
• Watch this Alzheimer’s Discovery Video Testimonial: Support Creating Positive Story Lines

• "When my wife was first diagnosed, it scared me so much not having any idea how she would progress. It’s easy to fall into the trap of comparison, looking at other people on this journey and trying to judge whether we were better or worse off. But that wasn’t fair to my wife or myself, and it only added stress. Everyone living with dementia deals with challenges, but no two stories are exactly the same. Focus on where you are and what you can do to find joy today."

• "There is no way to go through this without frustration, and sometimes you will feel like you’ve “messed up.” There will be times when you say something you regret. Forgive yourself and remember that this is hard, and you are doing your best."

• "Look for programs at local churches, community centers, or adult day programs. For a long time, I avoided taking my husband to respite programs because I thought he wouldn’t like them. However, these programs are designed for people with dementia and offer engaging social interaction at an appropriate level. Once we started using them, I realized my husband would have benefitted from it even earlier. Don’t wait until you can no longer leave your loved one at home safely. Try out different options, and you will know what’s a good fit and what isn’t."

• "It is very hard not being able to know the future. In the beginning, I worried and worried about how long the course of this disease would be for my spouse. The worrying really wasted a lot of my time and energy. My advice is to take care of the items you have to take care of early on: finances, legal documents, etc. But then focus on living in the present, and don’t let fear keep you from enjoying life."

• "When you have to make decisions for your loved one concerning their safety and that of others, have your doctor lead that conversation if possible. My husband’s neurologist set limits on where he could still drive early in the disease. As my husband progressed, the doctor was the one who told him he should no longer drive. This approach helped my husband accept this big transition, and I didn’t have to be the bad guy."

• "One of the most common worries is when to move your loved one into a memory care facility. The answer is different for everyone, but keep in mind that it is usually better to make changes before there is a crisis. Let go of your guilt over this decision – you have done the best you can for as long as you could. I was still a huge part of my wife’s life after the move – I visited often, and we enjoyed meals together, talked, and went on walks. I felt at peace knowing she was safe in a place that could meet her needs better than I could at home. You will feel it when the time is right for your family."