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.
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:
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
Learn more: Symptoms of depression
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.
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: Hear from
others living with Alzheimer’s about their response to the diagnosis and their
process to move forward.
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?
Alzheimer's disease
- How will the disease progress?
- What can I expect in the future?
Treatments
- What treatment options are
available?
- Which symptoms are being targeted by each medication?
Clinical trials
- What clinical trials are
available?
- Where can I find published information about clinical
treatment studies?
Care team
- How familiar are you with
Alzheimer's disease? Will you be managing my care going forward?
- If I need to be hospitalized, will you be able to
provide care in this setting?
Care and support
- What resources are available to
help me learn more about my diagnosis? My family?
- What support services are available to help me live
well with the disease, for as long as possible?
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