Fear or shame? Hiding memory problems as we get older


Big changes in forgetfulness, thinking, and understanding could be an early sign of Alzheimer’s or other dementia

ICT Opinion

Jolie Crowder, PhD(c), MSN, RN, CCM
Dave Baldridge
Kendra Kuehn, MSW
William Benson

It might start with trouble remembering what the doctor said yesterday at your checkup. Or maybe you notice new problems making a familiar recipe, or you’ve made unusual or even bad choices about how you spend your money. Maybe you forgot to pay bills or paid them twice.

People have different symptoms, but one thing remains the same for Alzheimer’s disease and other forms of dementia: As dementia gets worse, so do issues with thinking, remembering and problem solving.

Everyone slows down as they age, but big changes in forgetfulness, thinking, and understanding do not happen to everyone. These changes could be an early sign of Alzheimer’s or other dementia.

Alzheimer’s disease affects almost six million people in the United States. One out of every 10 people 65 years and older has it, and it is the nation’s fifth leading cause of death for older adults. A recent study in California found that 35 percent of American Indians and Alaska Natives (Natives) who reached 65 years old would develop dementia. That is one out of every three Native elders.

Unfortunately, few big research studies have included Native populations, so not much is known about dementia among Native elders. Earlier research had suggested that the number of people with dementia and Alzheimer’s among Natives might be lower than in other groups, but some tribal health care workers have long thought this was wrong.

The California study, the first of its size, found that Natives were more likely to develop dementia than people who identify as white, Latino/Latina, or Asian. An earlier study by the same researchers also found that Natives with diabetes were 60 percent more likely to develop dementia than people who identify as Asian. A third study found that Natives and other minorities were greater than two and a half times more likely to develop early onset dementia (before age 65) and that it often occurred along with depression or anxiety.

Fear, shame, or feelings of dishonor can be real concerns for elders and their family after a diagnosis of Alzheimer’s disease. But they are concerns that tribal communities, elders, and family members can work to fix.

As people think about how memory problems will affect their lives, their fears grow. Elders fear not being able to do things for themselves, such as driving, picking out clothes, or making meals, and they may fear becoming a burden on family. Family members may fear how quickly the symptoms will worsen or how long a loved one will have to live with the disease.

This fear or shame can keep elders and people who help care for them from seeing a doctor or talking to family and friends when they first notice symptoms. Yet early diagnosis by a doctor is important. The sooner a person knows what is wrong, the more time they have to plan for the future, get treatment, and find the right services and supports to help them through the process. Early diagnosis offers the chance to take advantage of medicine that can help with symptoms and allow time to rule out the possibility that something else might be causing memory problems.

Native elders face many barriers to good health care, and the barriers to getting a timely diagnosis of dementia or Alzheimer’s are bigger than most. Lack of awareness about dementia in tribal communities, lack of access to health care, and language barriers are just some of the problems. For those who do seek help, the lack of available services and supports, especially in smaller tribal communities, can make the disease harder to manage.

Cultural beliefs about aging may contribute as well. According to Drs. Lori Jervis and Spero Manson, researchers who work with Native communities, some Natives believe that life begins and ends like a child, or that changes in thinking and memory are part of the normal process of dying. Which we now know is not true.

Fear and worry about Alzheimer’s or other dementias cause some people to avoid talking about problems when they start. It might seem too hard or overwhelming to find the right answers or a doctor who can help. However, the sooner a person sees a medical professional and the sooner they get answers, the more power and control they will have over their health, life, body, and mind.

If memory problems or forgetfulness already make it hard to get through the day, elders or their family members should call a doctor right away.

Even if elders are not having problems with memory or thinking now, they and even their younger family members should start taking steps to keep their minds, hearts, and bodies healthy. The earlier a person makes these changes, the healthier their bodies and minds will be.

Key steps you can take for a healthy mind, heart, and body:

  • Call your doctor today for an appointment to talk about how to keep your mind and heart healthy.
  • Schedule “wellness” checkups and health screenings every year. Blood pressure and diabetes screenings are usually free with Medicare Part B or through the Indian Health Service.
  • Get a little exercise every day.
  • Eat more fresh fruits and vegetables and foods low in salt and sugar.
  • Stop smoking and chewing tobacco.
  • Get help managing high blood pressure, diabetes, high cholesterol, and depression or anxiety.
  • Protect your head. Falls are the number one cause of head injury in older adults.
  • If you are having trouble with memory or forgetfulness, see your doctor right away.

This article is provided by the International Association for Indigenous Aging (IA2). IA2 is a non-profit educational association that works to improve services for American Indian and Alaska Native elders around the country, and address the most significant issues facing Indigenous elders including issues of health and wellness, environmentalism, community engagement, elder abuse and neglect and more. To learn more visit www.iasquared.org.