Ask the Expert: Alzheimer’s Books June 2025

Amy Natt

My sister was recently diagnosed with Alzheimer’s disease, and I feel overwhelmed and unsure of what to expect. I want to be supportive and learn as much as I can, but I am also scared for the changes this might bring in my life. I feel guilty that I’m not thinking more about my sister and less about myself right now. How can I learn more about this for myself without ignoring my sister’s needs?

First, thank you for your honesty and courage in sharing what you’re feeling. What you’re experiencing is not selfish—it’s human. When someone we love receives a life-changing diagnosis like Alzheimer’s, it’s natural to feel a mix of emotions: fear, grief, confusion, guilt, and even worry about what it might mean for us personally. You are not alone in this.

Your concern for your sister is clear—you want to support her, and that desire is already an act of care. At the same time, it’s completely valid to have questions about the impact and changes it may bring in your own life. Loving someone doesn’t mean you stop being a person with your own fears and needs. Both can be true at the same time.

Here are a few suggestions:

  1. Learn Together, if You Can: Consider reading books or watching short educational videos on Alzheimer’s that are designed for families. The Alzheimer’s Association (alz.org) is a great starting point. You might even share these resources with your sister, if she’s open to it, so you can both feel less alone. If you live in North Carolina, the Dementia Alliance of NC is a great resource https://dementianc.org/ and offers local support and programs you can both benefit from.

Some great book options are:

  • Living Your Best with Early-State Alzheimer’s by Lisa Snyder
  • The Alzheimers Action Plan by P. Murali Doraiswamy
  • The Other Side of Alzheimer’s by Martha-Lee B. Ellis
  • A Dignified Life: The Best Friends ™ Approach to Alzheimer’s Care: A Guide for Care Partners
  • The Emotional Journey of the Alzheimer’s Family by Robert B. Santulli
  1. Make Time for Your Own Processing: It’s okay to make space to explore your own questions—about risk, prevention, and emotional impact. You might find peace in speaking with a counselor, joining a caregiver support group, or simply journaling your thoughts without judgment.
  2. Focus on What You Can Control: While there is a genetic component to Alzheimer’s, lifestyle factors—like regular physical activity, heart health, sleep, and mental stimulation—also play a large role. Focusing on brain-healthy habits is something you can do for yourself right now, not out of fear, but out of hope.
  3. Stay Present with Her: Supporting your sister doesn’t have to mean fixing everything or hiding your feelings. Sometimes, just being present, listening, or sharing a cup of tea is the most meaningful thing you can do.
  4. Work on a plan: If you are the primary support for your sister, it may help to meet with a care manager to help develop both short- and long-term goals for her care. You, as well as any involved family members or friends, can help create a road map for what care may look like. This might include support that will be needed, the setting she may want to be in and other preferences in the care she will need. This might include estate planning so that her wishes can be documented for how she wants to live and who will help make decisions for her if she becomes unable to do so.
  5. Create a safety net: You all are not on this journey alone. Learn from those who have had similar experiences. Create a team of both formal and informal support that can be accessed as needs increase. This might include friends, spiritual support, medical and social components.

You don’t have to choose between being there for her and taking care of yourself. Doing both is a form of strength and love. Now is the perfect time to start having conversations and learning together about the journey ahead and steps you can put in place to honor her dignity while maintaining some autonomy in your own life. Contact CaregiveNC today to learn more.