Alzheimer's blog

You can help change the stigma of Alzheimer's

By Angela Lunde September 18, 2012

"The Alzheimer's epidemic is no longer emerging, it is here."

Those are the words of my colleague, Dr. Ronald Petersen, director of the Mayo Clinic Alzheimer's Disease Research Center and chairman of NAPA (National Alzheimer's Project Act).

NAPA is a national health plan signed earlier this year by President Obama intended to ensure strategic planning and coordination in the fight against Alzheimer's across the entire nation. Despite this epidemic, awareness of Alzheimer's isn't where it should be.

This month is World Alzheimer's Month and a time when some of you may choose to raise your voice in an effort to increase awareness.  I invited Carla Zbacnik, from the Alzheimer's Association Minnesota-North Dakota Chapter to share some thoughts with you.

"Alzheimer's disease is an international epidemic impacting a growing number of families around the world. Yet, it is often misunderstood, preventing people from seeking medical treatment and securing desperately needed support. The stigma behind Alzheimer's is huge. Gigantic. Think back to when cancer was the whispered "c" word. That's what we are dealing with. People who don't want to talk about a disease that is impacting 1 in 8 adults over the age of 65 and nearly 50 percent of people over 85.

But there's hope. There are people like Julie Allen, who was diagnosed at the age of 58 and spoke openly and honestly about living with the Alzheimer's at the Alzheimer's Association and Mayo Clinic's Meeting of the Minds Dementia Conference. Julie doesn't whisper about having Alzheimer's — she commands the attention of 1,200 people and before our eyes changes the stigma.

You can too. Every time someone whispers Alzheimer's or ignores the signs of dementia — speak up. September is World Alzheimer's Month and a time where we ask communities across the globe to join us in the fight against Alzheimer's.

Recently, the Alzheimer's Association National Early-Stage Advisory Group comprised of men and women from across the country who provide their unique insight on the needs of people living with Alzheimer's and their caregiver, developed and released the following tips on how to combat stigma based on their personal experiences:

  • Communicate the facts about dementia. Accurate information helps clear up misconceptions about the disease.
  • Seek out friends and foster a positive way of communicating, explaining to others what it's like to have the disease, how you are coping and what projects you have planned for the future.
  • Be open and direct about the diagnosis and engage the person in a discussion about Alzheimer's disease and the need for methods of prevention, treatment and a cure.
  • Denial of the disease by others is "about them" and not about you. There are those who may be quick to think people living with Alzheimer's are simply going through the normal aging process. This is a perfect time to educate them.
  • There are a lot of people who do and will support you and keep you involved in their activities. Stay connected to them and focus on what you can still do. This is where you need to be. Connect and seek support from other individuals who are also living with the disease or are caregivers.
  • There is no shame in having Alzheimer's — it's a disease. Talk openly about it.
  • Advocate for self and be a part of the solution by speaking out and educating others.
  • Give others a link to information or booklets so they can understand Alzheimer's has various stages.

Tell your story. Tell their story. Help us change the stigma of Alzheimer's in your community. The end of Alzheimer's starts with us."

(The Alzheimer's Association is the world's leading voluntary health organization in Alzheimer's care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research, to provide and enhance care and support for all affected, and to reduce the risk of dementia through the promotion of brain health. Our vision is a world without Alzheimer's. To learn more about Alzheimer's disease and overcoming stigma, call 1-800-272-3900 or visit www.alz.org.

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Sep. 18, 2012