Ending the Shame and Blame About Alzheimer's Disease

Coming Clean About the Dirty Little Secret of a Dementia Diagnosis

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Have you ever noticed how an Alzheimer's diagnosis is shared with others? Most commonly, it's not.

Diagnosis of Alzheimer's vs. Cancer: How Are They Shared?

A new diagnosis of Alzheimer's or another kind of dementia might be whispered in the corner of a room at a family gathering, or spoken quietly to just a handful of very close people—sometimes with a request not to share this information with anyone else.

Many times, it's completely hidden or ignored altogether. This can sometimes result in the discovery of dementia only after something bad happens, such as getting lostfinancial mishapscar accidents.

In the World Alzheimer Report 2012, researchers found that approximately 1 in 4 persons hid their diagnosis from others. It's a hush hush matter for many—almost like it's a dirty little secret that must be hidden away.

In contrast, if your loved one was just diagnosed with cancer, you are much more likely to share this news with others, whether that's by a phone call, text, or social media. You might set up an online journal where you regularly provide updates on his condition, recent treatments, and what he might need for support, whether that's meals, prayers, or rides to his chemotherapy appointments.

Avoiding or Denying the Diagnosis

In addition to not sharing the diagnosis, many people avoid getting any diagnosis at all.

They hide their confusion from family and friends, they deny any concerns at the doctor's office or skip the appointment, or they avoid places or situations that might cause them to slip up and show their struggle with word-finding or memory.

Why Do We Hide Dementia?

Stigma

The World Alzheimer Report 2012 compared the general public's feelings about Alzheimer's disease (and related dementias) to other chronic conditions including mental health conditions such as depression and AIDS, which was very much a whispered diagnosis, especially a couple of decades ago.

There are many unspoken responses and reactions to the word "Alzheimer's." While some of those responses contain compassion, shared grief, and ongoing support, others include stigma, fear, and uncertainty. Additionally, some people subconsciously categorize the person with a new dementia diagnosis to a "caution" category, almost as if they are now a food item that might be beyond its "best by" date. These feelings and reactions, many of which are unintentional but detrimental, are what we need to change.

Unless this stigma of dementia is challenged, we multiply the challenges of Alzheimer's disease and other types of dementia, adding insult to injury. Not only do we have to cope with dementia, we also have to figure out how to handle the responses of those around us.

Shame and Embarrassment

Unlike a condition that's strictly physical, dementia has connotations of "insane," "crazy," "losing it" and "senility." So, after a diagnosis, rather than a response of "I need the help and support of those around me to get through this" (which might be a typical response to other diagnoses), a common response to dementia is embarrassment and shame, which results in attempts to hide the condition.

Definitions of shame include words such as humiliation, distress, and dishonor. Some people report feeling like they have let down those they love by developing dementia.

Blame

Because there are many things we can do to reduce the risk of dementia, those that develop dementia may feel that it's their fault. Reactions can include statements such as "I should have..." or "If I had just taken better care of myself" or "If only she would have exercised once in a while." Although it's true that many lifestyle habits can increase or decrease the risk of Alzheimer's, it's also true that some people develop dementia despite having done everything "right." 

Blaming yourself or someone else after the fact serves no purpose and adds to the burden of the diagnosis.

Loss of Friends

People living with dementia often report that friends and relatives withdraw from them, almost if they have already died. Perhaps this is a result of the uncertainty of what to say or a lack of knowledge of how to support the individual, but it increases the pain of the disease. 

Fear of Being Discredited

In addition to having friends back off, there's also the potential for the general community to write off the individual. For example, if your grandfather- a respected authority in his profession- was diagnosed with dementia, he might no longer be sought for any opinions and his past reports may be now questioned. While cognitive ability clearly does change in dementia, it's also possible that a person's expertise may remain for quite some time because it's so deeply established. Most cognitive declines in Alzheimer's disease are gradual, not a complete loss that occurs on the day of diagnosis.

Fear of Dementia Being Their Only Identity

While there's many parts and characteristics that make up a person, dementia is a powerful one and can sometimes overshadow the others. All interactions from others may seem to contain pity, instead of a balance of compassion, understanding and ongoing respect. 

Stereotypes and Misinformation About Dementia

Some people with dementia describe the assumptions of others about them as if they suddenly are completely unable to speak, need to be treated like they were a child (called elderspeak), have no memory whatsoever, lost interest overnight in anything around them and were physically incapable of all activities immediately. 

There's a lot of wrong information and myths out there about Alzheimer's and related dementias, and when the opinions of those around you are formed by that wrong information, it can increase the difficulty of coping with dementia. If you share a diagnosis of dementia with someone, you might need to be prepared to help correct some of their misunderstandings about the condition.

Loss of Driving 

Alzheimer's and other kinds of dementia are often hidden because a person doesn't want to lose their ability to drive before this is necessary. Some states require a person with dementia to retest for their driver's license, and this triggers anxiety about possibly losing this ability and the associated independence.

Loss of Job

Sometimes, a diagnosis of dementia is not shared at work because of fear of losing a job. Especially for people with early onset dementia (dementia that affects younger people), a person may still be employed when she starts experiencing the symptoms, which can make navigating a job and coworkers quite challenging.

Fear of Losing the Right to Make Decisions

As Alzheimer's disease progresses, a person gradually becomes less able to make or understand complicated medical decisions. However, just because someone has a diagnosis of mild cognitive impairment, dementia or Alzheimer's disease does not mean that they are at the point of being unable to make these decisions. Some people fear a loss of control over these choices simply because of the label their medical chart has, and they experience medical practitioners asking questions to those around them, rather than directly to them.

Appointing a trusted loved one to serve as a power of attorney for medical decisions can ensure that your choices continue to be honored. It's important to know that until and unless two physicians (or a physician and a psychologist) have determined that you aren't able to participate in medical decisions, the medical power of attorney isn't activated yet. This means that questions, discussions and decisions about your healthcare and choices should directly involve you- not be deferred to your loved ones. 

Concern About Those Around Them

Some people don't talk about their own dementia diagnosis because they don't want to upset others around them. They are aware of the potential for discomfort and want to spare this feeling for others.  

Ageism

Others describe the bias they experience as older adults being multiplied greatly by a diagnosis of dementia. The assumption for some is that an older person is frail, tired and slow, and adding dementia to that list equates to an easily disregarded individual. 

Uncertainty of Diagnosis

According to some research, more than half of those with dementia are not told of their own diagnosis. Sometimes, family members or doctors are not certain about how the person will respond to the diagnosis and therefore don't fully disclose it. This demonstrates the concerns and uncertainty about how to talk about Alzheimer's disease. 

Time to Accept the Diagnosis

Some people who don't share their dementia diagnosis with others withhold it because they're still trying to come to terms with it and need more time before trying to explain it to others. 

Protect the Person With Dementia

It's not always the case that we're afraid to talk about dementia. Rather, sometimes we don't mention Alzheimer's or dementia openly because we don't want to hurt or upset the one struggling with it. He may have forgotten he has the diagnosis, and openly talking about it has the potential to renew the challenge of coping with dementia.  

Absorb These Truths

We can't deny that coping with the changes caused by Alzheimer's disease is very challenging. It's not a piece of cake, and it's not a glossed-over, photo-shopped fantasy of everything being just fine. It's not "just fine" anymore, and no professional or friend should tell you otherwise. Dementia attacks the brain, and this makes it different than many other health conditions out there.

But, in your struggles with dementia, remember that it's not a blemish that you must hide from others or a top secret burden you must carry alone. Rather, let's face the fact that we need each other in this challenge. We need to have the freedom to share the heartache, the fears and the difficulties about dementia. And together, we need to fight to reduce the stigma of this health condition.    

There is no shame or blame in Alzheimer's disease. Dementia is not your fault. It's not catching. It does not erase who you are or all of the things you've done over the years- the parenting, the teaching, the career, your youth, your faith, your identity. Dementia is not you, and that's a truth we shouldn't whisper.

Sources:

Alzheimer's Disease International. World Alzheimer Report 2012 Overcoming the stigma of dementia. ​https://www.alz.org/documents_custom/world_report_2012_final.pdf 

International Longevity Centre- UK. A compendium of essays: New perspectives and approaches to understanding dementia and stigma. http://www.ilcuk.org.uk/index.php/publications/publication_details/new_perspectives_and_approaches_to_understanding_dementia_and_stigma

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