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The Stigma of Dementia and Alzheimer’s Disease
- Alzheimer’s disease stigma
- Types of Alzheimer’s disease stigma
- The common causes of stigma around Alzheimer’s
- Beat off Alzheimer’s Disease Stigma
- Stigma is the first barrier to Alzheimer’s treatment
- Example of Living with Alzheimer’s without Stigma
- Reducing Society’s Stigma of Alzheimer’s
- Effective tips to get rid of the Stigma
Sufferers of Dementia and their families can often feel stigmatized by a society that is not yet used to the inevitable symptoms of an aging population.
Anyone who has faced a diagnosis of dementia or Alzheimer’s disease themselves or of a family member should never feel any stigma.
It’s important that you overcome any feelings of shame or embarrassment that may prevent you and your family from having a normal life.
There is, unfortunately, a great lack of awareness about Alzheimer’s disease in our society as well as many negative stereotypes about aging.
As children we’ve all joked about old people smelling or being slow, but as you get older and experience the health deterioration of those we love you start to see how unfair and hurtful those stereotypes are. Of course, the joke is we are all destined to get old and suffer the same!
Because of this lack of knowledge about this disease, you may find it difficult to adapt to Alzheimer’s if you have a stigma associated with it. This stigma may lead you to isolate yourself or your relative with Alzheimer’s from the surrounding world and make life even more difficult than it has to be.
In this article, I will help you understand and overcome this stigma which will enable you to start to live your life with less stress, facing the realities of dementia while not allowing it to engulf your life.
Alzheimer’s disease stigma
I feel your pain when you are suffering from the loss of your memory and clutter in your thinking, I think about the moment when your physician tells you that it is dementia and due to Alzheimer’s disease.
If you don’t know anything about Alzheimer’s, you will feel that you are the only one in the world who has it. The fear will dominate you and you will have a stigma around Alzheimer’s that will lead you to hide and isolate yourself from family and friends.
Stigma leads you to feel that you are rejected and undesirable; you develop the stigma because you fear to face your family and friends with this disease and you feel that they will refuse you, not interact with you, or withdraw themselves from your life. If you don’t overcome this stigma, your mental health will worsen.
Types of Alzheimer’s disease stigma
This describes the negative feeling of the public towards people with Alzheimer’s; they may try to avoid people with Alzheimer’s and leave them alone without support even if they clearly need assistance. In extreme cases, they may even mock people with the symptoms of dementia.
It describes the negative feeling of the sufferer themselves; he or she has a belief that they are not tolerated by the public. They may hide and withdraw themselves from social life. They may have a feeling of hopelessness and losing their self-esteem. This may lead him to depression, lack of self-care, and worsening health.
This describes the negative feeling of the individuals who are close to Alzheimer’s patients like caregivers, family, and friends. They may get upset by Alzheimer’s patient’s behavior or things they say, not realizing that the patient is not in complete control of their actions.
The common causes of stigma around Alzheimer’s
People have negative feelings about people with Alzheimer’s due to wrong beliefs about Alzheimer’s and those thoughts lead to stigma. People often believe the following untruths about Dementia and Alzheimer’s:
- Can’t depend on themselves, they are helpless and entirely dependent on others to do everything for them.
- Their behavior is deliberate to get attention or to be annoying.
- They aren’t aware of the surrounding environment and are completely isolated from reality.
- There is a change in their personality, they become more aggressive and have abnormal behavior.
- Alzheimer’s patients are a hopeless case with no light or bright sides to their illness.
- Alzheimer’s patients don’t understand anything you say to them.
But, by education and experience which has taught me about Alzheimer’s, I have found that all these statements are wrong to some degree.
People with Alzheimer’s are fundamentally the same person they have always been but with an illness that erodes or disguises their true selves.
Oftentimes, changes to the way you interact with an Alzheimer’s patient is all that is needed to break through the cloud of the disease and see the person underneath.
Beat off Alzheimer’s Disease Stigma
The reasons why you should get rid of these stigmas are that the stigma around Alzheimer’s will keep you from diagnosing the symptoms at early stages, getting effective treatment, having the support you need from others, and adapting the change in your life.
But if you know everything about Alzheimer’s disease, you will fight this stigma and have the experience to keep on the change that will occur in your life. Without stigma, you will have the ability to not to beat Alzheimer’s and dementia but to make the best of it and live without day after day of stress and upset.
Stigma is the first barrier to Alzheimer’s treatment
Stigma is the first barrier that prevents the patient from visiting the physician and getting the proper treatment at the early stages of Alzheimer’s. Thinking that there is no treatment for Alzheimer’s will lead you to isolate yourself and wait for your end.
However, early diagnosis with Alzheimer’s will help you to get an effective treatment that will improve the symptoms without any stress. Saying I have Alzheimer’s will give you positive energy that will help you lead a good life.
Example of Living with Alzheimer’s without Stigma
A lot of people get rid of the stigma around Alzheimer’s and have a happy life; they write about their experiences with this change, how they face the diagnosis of Alzheimer’s, and how they complete their life without stigma.
Christine Bryden had dementia when she was 46 years old; she challenged that and wrote about her experience with dementia. Christine encouraged people with dementia to overcome stigma and memory problems.
Christine said that her family, her husband, and her children were supportive of her when she was diagnosed with dementia. Her book (Dancing with dementia) for people who are suffering from Alzheimer’s and dementia to challenge their ideas, know themselves and plan their future.
Thomas Debaggio had developed Alzheimer’s at 58 years old, he wrote about his life with Alzheimer’s and how he overcame the negative feelings that impact the people who are suffering from dementia. He had two books about Alzheimer’s (Losing My Mind: An Intimate Look at Life with Alzheimer’s & when it gets dark: An Enlightened Reflection on Life with Alzheimer’s).
Thomas wants to inspire others and tells them that they can complete their life and function normally with Alzheimer’s.
Robert Davis wrote his story with Alzheimer’s (My Journey into Alzheimer’s). He encourages others to be stronger and face the feeling of darkness. He lives with Alzheimer’s and has the best life.
Jeanne Lee wrote a book (just love me: my life turned upside-down by Alzheimer’s). She described her life experience with Alzheimer’s. This book enables people to understand Alzheimer’s and how can they deal and contact properly with Alzheimer’s patients.
Louis Blank visited his doctor after had some problems with his memory and couldn’t recognize his wife and daughter. He was diagnosed with Alzheimer’s disease in 1993, but in 2 years he can face and fight Alzheimer’s.
In 1995, he wrote a book (Alzheimer’s challenged and conquered?). In his book, he told people how he had lived with Alzheimer’s and had a happy life with his wife and daughter. This book is the best one to any person needs to understand how to provide effective support to Alzheimer’s patient and help him overcome the feeling of stigma.
Many stories challenge the stigmas around Alzheimer’s and filled with hope. They take your hand from the darkness to the light. They tell you that Alzheimer’s isn’t the end of your brain, but it is the start to have a new brain with new memory and you will fill it with the beautiful things you want to remember, with hope, optimism, and happiness.
Reducing Society’s Stigma of Alzheimer’s
The stigma around Alzheimer’s doesn’t affect the patient only, but it affects his family and hurts all. Awareness and understanding Alzheimer’s is the first step to reduce this stigma and get rid of it. This will reduce the negative feeling of the patient and his family, and with the social support, fear will be reduced, and as a result, stigma reduces. In other words, it’s a vicious cycle.
With public awareness and positive attitude from society to Alzheimer’s, the patient will say without stigma (I have Alzheimer’s), and you can say with a loud voice (my father has Alzheimer’s). So, the person with Alzheimer’s will find support, interact, engage, and communicate well with others. He will have the ability to do his daily activities without obstacles. He can think, make a decision, and plan for the future.
Effective tips to get rid of the Stigma
- Learning and knowing more about Alzheimer’s will give you more confidence in yourself, which helps you make your decision about managing and completing your life with Alzheimer’s.
- Reading more success stories about people who suffered from Alzheimer’s, fought it, and had a happy life. This will help you to be stronger and have an experience to face stigma around Alzheimer’s.
- Engagement with people like you will encourage you to beat off this stigma and get experiences about Alzheimer’s progress. This will help you to overcome obstacles that may face you in your life.
- Communication and interacting with others will help you to get rid of the rejection feeling from society.
- Don’t stop your daily activities and routine, do what you love, practice your hobbies, and sharing your thoughts with others.
- Making sure that Alzheimer’s treatment is effective and improving the symptoms, so overcoming the stigma will lead you to get the right diagnosis and proper treatment. You will be well and have a normal life.
- Writing your daily activities, feeling, persons, and memories. Sharing with others your experiences and changes you have in your life after you have Alzheimer’s. Think about the future and plan to have the best life.
Finally, the stigma around Alzheimer’s causes harm to sufferers of Alzheimer’s as well as their family Stigma directly leads to isolation, withdrawal, and depression.
It has a deeply negative impact that may stop patients from communicating, be reluctant to ask for help and ultimately worsen their health. Removing the stigma is a very important step and the start of a successful Alzheimer’s treatment. Without stigma, living with Alzheimer’s can be that much less stressful and more enjoyable for everyone concerned.