AlzU Blog

Overcoming the Stigma of Alzheimer’s Disease

One of the biggest challenges for caregivers and families as well as individuals with Alzheimer’s Disease (AD) is the stigma surrounding the disease.  Many people report feeling misunderstood because of so many misconceptions that the public has about AD.

What is a “stigma?”

You may wonder just what a “stigma” is.  A stigma is a negative label used to describe a disability or disease such as AD.  The stigma surrounding AD is a result of the lack of public awareness and understanding of many of the true facts about the disease.  The solution to the stigma surrounding any disease including AD is public education.

In order to eventually find a cure for AD, it’s important for misconceptions to be addressed because embarrassment or shame about the disease could interfere with individuals and family members wanting to get involved in clinical research projects or sometimes even seeking treatment. 

Some experts in the field believe that the stigma of AD may even have something to do with the reason government funding for AD research is so much lower than other efforts to find a cure for diseases such as cancer.

There are other ways that the stigma of AD may adversely affect individuals with AD and their families and caregivers.  Friends of the family may distance themselves once they find out about the diagnosis because they’re unsure how to cope with it.  Others may refuse to talk about the disease directly or may even experience a state of denial.  Individuals with AD may notice that friends refuse to address them directly or they may talk as though the person with AD doesn’t understand the conversation. 

Here are some tips for debunking myths surrounding AD:

  • Know the symptoms of the disease and seek out medical attention early on for any symptoms
  • Live the highest level of quality of life for as long as possible
  • Stay in the present, don’t waste energy or time worrying about the future
  • Keep informed about what to expect and prepare for the future, make important decisions early on
  • Seek out a strong support group-for caregivers, family members and individuals in the earlier stages of AD
  • Get involved in the efforts to find a cure-participate in clinical research studies and public education efforts
  • Join the Alzheimer’s Associations “Early Stage Advisory Group”
  • Be open and direct with friends and family members about the disease-share the facts through passing on brochures, website links, and other educational materials
  • Try not to take other people’s myths surrounding the disease personally-use it as an opportunity to educate them whenever possible
  • Deal with others as directly as possible and make an attempt to educate yourself , friends and family members early on

Keep in mind that the stigma surrounding AD usually comes primarily from a general misunderstanding and lack of education surrounding the disease. To learn more about AD, be sure to sign up for our 25 topic online lessons by CLICKING HERE to join.

Some people may need a little time to get over the initial shock, so taking some time to help gradually educate friends and family may be the best way to handle some situations.  When in doubt, talk to others who have already been through similar situations by reaching out to your support group.  By working together and getting involved, educators, professionals, family members and individuals with AD can make a difference in how the public views Alzheimer’s Disease.

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