Receiving a diagnosis of Alzheimer's is never easy — it's life changing. It is normal to experience a range of emotions. Acknowledging your feelings can be an empowering first step in coping with the challenges ahead.
Emotions you may have
You noticed symptoms. You made a doctor's appointment. You took tests. And you felt a roller coaster of emotions — fear, hope, despair, denial. Then you received a diagnosis. You may have felt numb, unsure of how to respond or where to turn.
You also may be grieving over the present losses you are experiencing, or the expectation of future changes as the disease progresses. It can be helpful to identify and understand some of the emotions you may experience after receiving your diagnosis.
These emotions may include:
I am more
Learn how your diagnosis does not have to define you.
- Anger. Your life is taking a different course than the one you and your family had planned. You cannot control the course of the disease.
- Relief. The changes you were experiencing were cause for concern. A diagnosis validated these concerns by assigning a name to your symptoms.
- Denial. The diagnosis seems impossible to believe. You may feel overwhelmed by how your life will change as a result of Alzheimer's.
- Depression. You may feel sad or hopeless about the way your life is changing.
- Resentment. You may be asking yourself what you did to deserve your diagnosis or why this is happening to you and not someone else.
- Fear. You may be fearful of the future and how your family will be affected.
- Isolation. You may feel as if no one understands what you're going through or lose interest in maintaining relationships with others.
- Sense of loss. It may be difficult to accept changes in your abilities.
If these feelings linger week after week, you may be dealing with depression or anxiety. Feeling depressed or anxious about your diagnosis is common, but both can be successfully treated.
Learn more: Symptoms of depression
Taking care of your emotional needs
Coming to terms with your diagnosis and the emotions you are feeling will help you accept your diagnosis, move forward, and discover new ways to live a positive and fulfilling life.
My reaction [to diagnosis] was one of both sadness and relief. Sadness because I knew what was ahead; relief, now that I knew I could take steps to prepare myself for a different life.
Mary T., Living with Alzheimer's disease
You are the only person who can change how you feel about your diagnosis. So it's important to find healthy ways to deal with your emotions. This can be difficult at the beginning. But once you make the commitment to take care of your emotional needs, you may find that you can rise to the challenge and face your diagnosis. This is a new phase of your life, and you can choose to experience it with sense of connection to your emotional health.
When working through your feelings, try a combination of approaches. The following tips may be helpful:
- Write down your thoughts and feelings about your diagnosis in a journal.
- You may find your friends and family struggling with your diagnosis and their feelings. Learn more about how you can help family and friends.
- Share your feelings with close family and friends. Speak openly and honestly about your feelings.
- Surround yourself with a good support system that includes individuals who are also living in the early stage of the disease and understand what you're going through. Join our ALZConnected message boards or learn more about support programs.
- Join an early-stage support group. It can provide you with a safe and supportive environment of peers. To find a support group in your area, check with your local Alzheimer's Association chapter.
- Talk to your doctor if you or others are concerned about your emotional well-being. Your doctor can determine the most appropriate treatment plan to address your concerns.
- Seek help from a counselor or clergy member. He or she can help you to see things in a new way and help you understand more fully what you are feeling.
- If you are feeling misunderstood or stereotyped because of your diagnosis, learn what you can do to overcome stigma.
- Stay engaged. Continue to do the activities you enjoy for as long as you are able.
- Take the time you need to feel sad, mourn and grieve.
- No two people deal with their diagnosis in exactly the same way. There is no right approach. Some days may be more difficult than others, but don't be discouraged. Learn coping tips to help you manage challenges.
You are not alone
A diagnosis of Alzheimer's disease can leave you feeling disconnected, isolated or abandoned from others. You may feel unsure of where to turn and that no one can possibly understand what you're going through. People living with early-stage Alzheimer's have stated that one of the most important lessons they learned early on in their diagnosis is this: They could not just wait for others to help them — they had to go out and help themselves to the best of their ability.
Whenever facing difficult times, having a good support network you can turn to for advice and encouragement may help you feel socially connected and give you a sense of belonging and purpose. Make sure your network includes other people who are living in the early stage of the disease. Connecting with others like you may help put your own experiences living with the disease in perspective, and provide you with the support and encouragement necessary to move beyond your diagnosis. Two good places to start: Join a support group or our online community, ALZConnected.
Life after diagnosis videos
Life after diagnosis: Hear from others living with Alzheimer’s about their response to the diagnosis and their process to move forward.
Questions for your doctor
After receiving your diagnosis, it's normal to leave your doctor's office unsure of what questions to ask. You just received life-changing news, and you need time to absorb this information and understand what it means for you and your family.
Your doctor is an important member of your care team. Use the opportunity to ask your doctor questions about your diagnosis, all the available options, and the benefits and risks of each choice you make.
You may be asking: "How do I know what to ask my doctor?"
Members of our Alzheimer's Association National Early-Stage Advisory Group have shared their own experiences and questions they wish they had asked their doctors. You may find this information helpful as you develop your own list of questions.
Here are some example questions:
The diagnosis of Alzheimer's disease;
- What test(s) or tools did you use to determine my diagnosis?
- What are you measuring with the tests you performed?
- How will the disease progress?
- What can I expect in the future?
- What treatment options are available?
- Which symptoms are being targeted by each medication?
- What clinical trials are available?
- Where can I find published information about clinical treatment studies?
- How familiar are you with Alzheimer's disease? Will you be responsible for my care going forward?
- If I need to be hospitalized, will you be able to provide care in this setting?
Care and support
- What care planning services do you provide?
- What support services and resources are available to help me live well with the disease, for as long as possible?