The Stigma of Having Dementia: To tell or not to tell

若い女性One of the hardest things about getting a diagnosis of Alzheimer’s disease is deciding when and whom to tell. When my husband was diagnosed with younger-onset Alzheimer’s disease at 60 years old we were afraid that people would treat him differently, and that our friends would write us off.

Although we were excluded from some social events and intimate dinners by friends who didn’t have the patience to listen to the same story repeated over and over, or by those who simply didn’t know how to act around someone with dementia, most of our friends created a warm, caring cocoon that helped us feel safe and loved.

In the beginning, I refrained from telling our children about their dad’s diagnosis for an entire year, hoping to delay their heartache. Our youngest daughter had just gone off to college and we wanted her to have one year in which she could focus on her studies and friends, without worrying about her parents.

I tried my best to cover up my husband’s gaffes, slips of memory, and awkwardness in social situations. Eventually, we withdrew from our old life because of the challenges that accompany dementia, and we socialized only with family and intimate friends. Our world became increasingly smaller as I became lonelier and more isolated.

When I look back at that time I find it naïve to think that divine intervention or a miracle would cure my husband. After all, I thought, why tell people about his diagnosis when perhaps he’ll be cured as a result of taking myriad nutritional supplements and getting healings from alternative practitioners? It can remain our little secret.

It turns out that according to a survey published in the World Alzheimer’s Report 2012: Overcoming the Stigma of Dementia, we weren’t alone in trying to keep my husband’s diagnosis a secret. (We did tell my parents, his brother, and a few very close friends.) Nearly one in four people with dementia (24 percent) who responded to the survey said they hid their diagnosis, citing stigma as the main reason. They expressed concerns that their thoughts and opinions would be discounted and dismissed, and that they would be treated more positively if they did not reveal their diagnosis.

Why worry about stigma when you’ve got so many other worries?

Identifying stigma is important because it:
• Gets in the way of receiving the proper help and care people with dementia need in order to live life optimally
• Leads to stereotyping and discriminating of the elderly and those with dementia
• Damages the fragile self-esteem of people with dementia
• Is a major cause of social isolation for the dementia patient and his or her family
• Is a barrier to the caregiver’s utilization of community services and obtaining support from family and friends
• Reduces the depression and burden for the caregiver

Doctors keep secrets, too. What happens when the doctor doesn’t reveal a diagnosis?

According to a report released March 24, 2015 by the Alzheimer’s Association, just 45 percent of Medicare patients who’d been diagnosed with Alzheimer’s said they were informed of the diagnosis by their doctor. By contrast, more than 90 percent of Medicare patients with cancer said they were told by their doctor.

One reason doctors often cite for not telling patients is the time constraints of a typically short appointment, says Keith Fargo, director of scientific programs at the Alzheimer’s Association. “It’s difficult to disclose a diagnosis of a fatal brain disease in just a few minutes,” he says. (The average length of time a doctor spends with a Medicare patient is just 8 minutes.)

It’s also hard for doctors to tell patients they have a disease that can’t be stopped or even slowed down by a drug or surgery, Fargo says. And, he says, doctors often fear the emotional reaction an Alzheimer’s diagnosis can cause.

However, the Alzheimer’s Association believes that telling the person with Alzheimer’s the truth about his or her diagnosis should be standard practice. Disclosure can be delivered in a sensitive and supportive manner that avoids unnecessary distress. And based on the principles of medical ethics, there is widespread agreement among health care professionals that people have the right to know and understand their diagnosis

Disclosing an Alzheimer’s diagnosis has several benefits:

  • Allows better access to quality medical care and support services
  • Provides an opportunity for people with a diagnosis to participate in decisions about their care, including providing informed consent for current and future treatment plans
  • Enables the patient to get the maximum benefit from available treatments
  • Increases the chance of participating in clinical drug trials

What can you do?

In response to the World Alzheimer’s Report 2012: Overcoming the Stigma of Dementia, the Alzheimer’s Association came up with these tips for coping with stigma created by people living with the disease. Current and former members of the Alzheimer’s Association National Early-Stage Advisory Group developed these tips based on their personal experiences:

  • Be open and direct. Engage others in discussions about Alzheimer’s disease and the need for prevention, better treatment and an eventual cure.
  • Communicate the facts. Sharing accurate information is key to dispelling misconceptions about the disease. Whether a pamphlet or link to online content, offer information to help people better understand Alzheimer’s disease.
    • Seek support and stay connected. It is important to stay engaged in meaningful relationships and activities. Whether family, friends or a support group, a network is critical.
    • Don’t be discouraged. Denial of the disease by others is not reflection of you. If people think that Alzheimer’s disease is normal aging, see it as an education opportunity.
    • Be a part of the solution. Advocate for yourself and millions of others by speaking out and raising awareness. If you have the time and inclination, write letters to your state representatives, and to your newspaper.

If you or a loved one have received a diagnosis of dementia or Alzheimer’s disease I encourage you to not keep it a secret as I did. Be open and share your feelings with your family and friends. Unfortunately, because Alzheimer’s disease is predicted to become an epidemic for the Baby Boomer generation, almost everyone will be touched by it in one way or other. It’s important that we do our best to educate the public and the best place to start is within our circle of family and friends—-because ignorance leads to fear and understanding leads to compassion.


 

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