LIVING WITH ALZHEIMERS
Receiving a diagnosis of Alzheimer’s Disease is life-changing and overwhelming. You and your family will have several questions and concerns about the disease and the future. It is important to know that there is help available for you and your family throughout the challenges ahead.
Clear and honest communication with health care providers and caregivers will be important for coping with AD. Reflecting upon patients’ needs, recently the Alzheimer’s Association published several principles about how to make the patient experience better. These principles establish a respectful relationship as the base for treating the disease while preserving patients’ autonomy. They include:
- Talk to me directly, the person with dementia
- Tell the truth
- Test early
- Take my concerns seriously, regardless of my age
- Coordinate with other care providers
- Explain the purpose of different tests and what you hope to learn
- Give me tools for living with this disease
- Work with me on a plan for healthy living
- Recognize that I am an individual and the way I experience this disease is unique
- Alzheimer’s is a journey, not a destination
An early diagnosis of Alzheimer’s disease is an opportunity to maintain autonomy for as long as possible. Being an active patient can help.
- Join a support group, and call the Alzheimer’s Association for information about local providers with experience in Alzheimer’s Disease
- Reduce stress by pursuing hobbies and exercising
- Maintain a journal of any physical, mental, or emotional changes that you experience to bring up with your doctor
- Control any other medical conditions, especially hypertension, diabetes, and heart disease
- Prepare for each doctor’s visit by identifying your top 3 concerns, and always bring an up-to-date list of any prescription and over-the-counter medications that you take
Remember that you will have good days and bad days, and that each person with Alzheimer’s Disease has a different experience.
- Alzheimer’s Association. Living with Alzheimer’s: For people with Alzheimer’s. Available at:
- Alzheimer’s Foundation of America. Brain Health. Lifestyle Choices. Available at: http://www.alzfdn.org/BrainHealth/successfulaging.html
- Alzheimer’s Disease Education and Referral Center. What Happens Next? Available at: https://www.nia.nih.gov/alzheimers/publication/what-happens-next