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Understanding The Stigma And Shame Surrounding Alzheimer’s Disease When It Affects Your Senior Loved One

Is your senior loved one cognitively impaired? Are you coping with the stigma and shame that surrounds an individual with Alzheimer’s Disease? Pegasus caregivers in Saugus and our other locations present these facts to help you overcome those negative reactions.

Individuals who have a memory loss or other loss of mental abilities are said to have dementia. Dementia itself is not a disease. It is a general term for a variety of diseases, of which Alzheimer’s Disease is perhaps the best known.  

It’s important to distinguish between Alzheimer’s and age-related issues in your senior loved one. Everyone experiences momentary forgetfulness or confusion at times. Following are the common symptoms of Alzheimer’s: 

  • Forgetfulness – not remembering dates, events, or that they have already asked the same question several times, or inability to recall words when conversing
  • Difficulty concentrating – unable to follow a plan, solve a problem, complete a task, or take a long time to do things they used to do easily
  • Confusion – loss of sense of time and place. Can be unaware of where they are or how they got there, where they put something
  • Changes in personality – expressed as poor judgment, withdrawal, moodiness, easily upset by changes, or negative emotions

This isn’t a comprehensive list, as symptoms differ among individuals. It’s essential to seek medical advice when you notice anything unusual. You will find a checklist here that can help your senior loved one get an accurate diagnosis. 

Although Alzheimer’s is regarded as an old-age disease, that’s not always the case. Early-onset Alzheimer’s strikes individuals younger than 65 years old. 

Brain Damage Is The Cause of Dementia

Dementia, including Alzheimer’s, results from physical damage to the brain. Alzheimer’s is a physical disease. Despite that, it is stigmatized.

Stigma is the use of negative descriptions. Those descriptions are often based on stereotypes. That’s because people lack the facts and don’t understand Alzheimer’s. 

A dementia diagnosis brings conditions like crazy or senility to mind for many. The shame and embarrassment caused by negative terms is one reason people hide or deny their diagnosis.

Examples of stigma include:

  • Loss of friendships
  • Changes in family relationships
  • Perception by others that the individual has no quality of life
  • Refusal of others to talk about the condition
  • Dismissal of diagnosis

Many people regard Alzheimer’s and other dementia diagnoses as a fate worse than death.

Often, individuals who suspect they have the symptoms of Alzheimer’s refuse to get a diagnosis. They tend to control their interactions with others to hide their confusion or forgetfulness. Once they are diagnosed, they experience emotions such as disbelief, denial, anger, and fear.

There is also the question of blame. Alzheimer’s isn’t a genetic disease, but there is a gene that increases the risk factor of developing it. And there are lifestyle habits that can increase the risk when an individual doesn’t change them.

People do not like to feel out of control. That makes it easy for Alzheimer’s patients to blame themselves for their condition. Nevertheless, it isn’t the person’s fault if they develop Alzheimer’s or other dementia. 

Individuals Are More Than Their Diagnosis

An individual’s personality has many facets. But once a person is diagnosed with Alzheimer’s, their condition becomes their only identity in the eyes of many. Some people incorrectly believe that individuals immediately lose all cognitive ability and treat them accordingly.

The assumption is made that the person can no longer think or speak. Other assumptions are that all memory and physical capabilities are totally gone. It becomes easy to dismiss someone who has even mild cognitive loss.

There are serious consequences to stigmatizing Alzheimer’s Disease. Individuals are too embarrassed or ashamed to seek medical care. Although there is as yet no cure, early medical intervention can slow the progress of the disease. 

Without help, your senior loved one may be silently struggling with:

  • Isolation
  • Withdrawal
  • Stress
  • Depression
  • Fear

They may have taken the stereotypes of dementia to heart and believe that life is over for them.

You can help them cope when you:

  • Discuss their condition frankly and spend time debunking stereotypes
  • Ask questions about what they understand, believe, or fear
  • Don’t use baby talk, and avoid talking about them as if they weren’t present
  • Encourage self-care 
  • Avoid isolation by taking them out or inviting others in

In the early stages, your senior loved one can continue to do most things with minimal assistance.   

You Can Help Researchers Find A Cure

Extensive research is ongoing. More than one group is conducting clinical trials with the goal of finding a cure. Others are striving to reduce the impact of the disease until a cure is available.

The stigma surrounding Alzheimer’s and other dementia keeps individuals from enrolling in a clinical trial. If you or your senior loved one would like to participate in the research, you can find current studies here. Pegasus is a licensed Home Care Organization and a Joint Commission Accredited Home Health Care organization. Our caregivers in Saugus and our other locations provide personalized services to fit the level of assistance needed. Individuals are always treated with dignity and respect for their privacy regardless of their medical needs.

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