UW MEDICINE | PATIENT EDUCATION Living with Memory Loss A basic guide First Edition, January 2017 “You go through the grief process and then you start living. Yes, there’s life after diagnosis.” ~ Myriam, living with dementia Memory and Brain Wellness Center | Box 359860 325 9th Ave., 3rd Floor West Clinic., Seattle, WA 98104 | 206.520.5000 Blank page UW MEDICINE | PATIENT EDUCATION | Table of Contents | | Living with Memory Loss: A basic guide | Welcome Chapters 1. The Memory Loss Journey A brief introduction 2. My Diagnosis What is going on, and what does it mean for my life? 3. My Next Steps How do I process this news, and who do I tell? DRAFT 4. My Medical Care What treatments are there for memory loss? 5. My Daily Life What can I do to be as healthy as possible? 6. My Relationships and Activities How can I stay connected with the people and things I love? 7. My Strengths How can I use my talents and skills to make a difference? 8. Supp0rt for Care Partners What should my family and friends know? 9. My Community What resources will be helpful on this journey? 10. My Plans for the Future What plans can I make now that will help later on? 11. Stepping Forward “Living in the possible” _____________________________________________________________________________________________ Page i | Table of Contents Living with Memory Loss | Memory and Brain Wellness Center | Box 359860 325 9th Ave., 3rd Floor West Clinic., Seattle, WA 98104 | 206.520.5000 12. Appendix My Workplace Rights................................................................... 2 Disability Insurance and Benefits ............................................... 4 Research Studies .......................................................................... 6 Books ............................................................................................. 8 Action Steps: A Checklist ............................................................ 10 My Care Team at UW Medicine Memory and Brain Wellness Center ........................................................................................... 12 My Contacts ................................................................................. 13 Terms and Definitions ................................................................ 14 My Notes ...................................................................................... 18 With Thanks ................................................................................ 19 Copyrights and Reprints ............................................................ 20 DRAFT _____________________________________________________________________________________________ © UW Medicine, Seattle, WA Published PFES: 01/2017 Page ii | Table of Contents Clinician Review: 01/2017 Living with Memory Loss | Memory and Brain Wellness Center | Box 359860 Reprints on Health Online: https://healthonline.washington.edu 325 9th Ave., 3rd Floor West Clinic., Seattle, WA 98104 | 206.520.5000 UW MEDICINE | PATIENT EDUCATION | | Welcome | From Dr. Tom Grabowski, Director of UW Medicine | Memory and Brain Wellness Center Dear friends, Welcome to the UW Medicine Memory and Brain Wellness Center. Our mission is to promote the well-being of people living with memory loss and their families. Our care team in the memory clinic is made up of experts in memory and brain health. We aim to provide outstanding care for you, every step of the way. We have created this handbook as a resource for your life after your diagnosis. It contains information and insights from our team DRAFTmembers, community partners, and others living with memory loss and their family members and friends. We hope that this handbook informs, encourages, and empowers you for your journey ahead. We welcome your ideas and feedback on this handbook as we work to make it even more helpful. Sincerely, Dr. Tom Grabowski Director, UW Medicine Memory and Brain Wellness Center Dr. Tom Grabowski _____________________________________________________________________________________________ © UW Medicine Published PFES: 01/2017 Page iii | Welcome Clinician Review: 01/2017 Living with Memory Loss | Memory and Brain Wellness Center | Box 359860 Reprints on Health Online: https://healthonline.washington.edu 325 9th Ave., 3rd Floor West Clinic., Seattle, WA 98104 | 206.520.5000 Blank page UW MEDICINE | PATIENT EDUCATION | The Memory Loss Journey | A brief introduction | | From Alice, living with dementia: “After hearing the news, I just felt totally lost. But you know what, I have a good life. That sounds crazy, but I do! “I get out, and I have fun, and I don’t worry about Alzheimer’s. Because if you can’t fix it, then you have to find a way to live with it. Photo by Rachel Turner, “I’ve got a group of people who Alzheimer’s Association love me, and who stand by me, and that is what life is supposed to be. “I just want all the happiness I can have, and that’s what I go for.” From Vivian, a care partner: “When my husband was diagnosed with Alzheimer’s, I didn’t have much information. The disease wasn’t in our family, so I was starting from scratch. “Knowing that there’s a community out there to draw on was very important.” _____________________________________________________________________________________________ Page 1 of 4 | The Memory Loss Journey Living with Memory Loss | Memory and Brain Wellness Center | Box 359860 325 9th Ave., 3rd Floor West Clinic., Seattle, WA 98104 | 206.520.5000 A Few Key Points As you begin this journey, we offer a few key points about living with memory loss: • You are not defined by your disease. You have people who love you, things you like to do, and gifts to offer. • Living with memory loss is not easy, but there are ways to cope with it. Healthy habits can help you feel better and think more clearly. You have time to adapt. You can find ways to keep enjoying life. A family meeting at the • You do not have to walk this path alone. Your family, Memory and Brain Wellness Center friends, and the MBWC team are with you as you move forward. People and programs are available in the community to help support you. _____________________________________________________________________________________________ Page 2 of 4 | The Memory Loss Journey Living with Memory Loss | Memory and Brain Wellness Center | Box 359860 325 9th Ave., 3rd Floor West Clinic., Seattle, WA 98104 | 206.520.5000 A Letter from The Gathering Place We would like to share a letter written to you by members of The Gathering Place. The Gathering Place is an early- stage memory loss enrichment program at Greenwood Senior Center in Seattle, Washington. This group spent many months thinking about what they most want to tell others who are newly diagnosed with memory Members of The Gathering Place loss or dementia. Here is their heartfelt message: Dear friend, We are a community of people living successfully with memory loss. We understand that you also have received a diagnosis of memory loss. We want to recognize your courage in finding out what is going on. It is normal to feel disbelief, anger, fear, and denial, but know that you are not alone. Our hearts go out to you. You may want to hide your diagnosis. Many of us did, too. But we have found that sharing what we are living with lightens the load. It also allows us to lessen the stigma around memory loss. We urge you not to hide. Connect with others who are living with memory loss, and encourage your family to get support. Acceptance is important. We are all in this together. We have learned to live with our memory loss and still have productive lives with family and friends. We would like to give you hope that you too can live a full life. There will be obstacles to come, but you have an opportunity to give back to your community and yourself, and to experience beauty, happiness, and kindness. Sincerely, Walt, Mark, Bob, Sarah, Roger, Ron, Helene, Rick, and Midge _____________________________________________________________________________________________ Page 3 of 4 | The Memory Loss Journey Living with Memory Loss | Memory and Brain Wellness Center | Box 359860 325 9th Ave., 3rd Floor West Clinic., Seattle, WA 98104 | 206.520.5000 Notes _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ _____________________________________________ Questions? Your questions are _____________________________________________ important. Talk with your doctor or healthcare _____________________________________________ provider if you have questions or concerns. _____________________________________________ • To learn more about the Memory and Brain _____________________________________________ Wellness Center, visit depts.washington.edu/ mbwc _____________________________________________ • To set up clinic visit, call _____________________________________________ 206.520.5000. _____________________________________________________________________________________________ © UW Medicine, Seattle, WA Published PFES: 01/2017 Page 4 of 4 |