How It Feels When Mild Cognitive Impairment Leads to an Alzheimer’s Diagnosis

The same is true for their friends and loved ones — especially those who are likely to become a primary caregiver — given that mild cognitive impairment can progress to Alzheimer’s or another type of dementia.

If you or someone you love has been diagnosed with any form of cognitive impairment, know that whatever emotions you struggle with are normal. And there are ways to prevent your feelings from overwhelming your ability to manage and live your life to the fullest.

Grieving the Decline of Cognitive Health

Memory lapses or the inability to complete simple tasks can be concerning. And when it turns out those symptoms are not simply due to normal aging, but instead indicate a neurological diagnosis such as mild cognitive impairment or the early stages of Alzheimer’s, the news can trigger a wide range of emotions.

In rare cases, the first reaction may be relief: It can bring some comfort to people “to be able to assign a name to what’s causing these symptoms,” says Monica Moreno, senior director of care and support at the Alzheimer’s Association. A diagnosis also paves the way for making plans to manage and treat the condition, which can bring a sense of control — and, for some, even a degree of optimism.

More often, though, a diagnosis of mild cognitive impairment delivers a gut punch, especially when an Alzheimer’s diagnosis follows. When it’s the latter, “It can be the worst-case scenario,” says Victoria Leavitt, PhD, a clinical neuropsychologist at Columbia University in New York City.

It’s not surprising, then, that a common first response is denial. “People think, ‘This can’t be happening to me,’” says Moreno. “Or, ‘They must have misdiagnosed me.’”

Family members and close friends can also be prone to denial. “We don’t want to face the true reality of the decline that our loved one is experiencing, so we sugarcoat it in some ways for ourselves,” says Dr. Leavitt.

When MCI Progresses to Dementia

Understanding how little agency someone living with Alzheimer’s has over their own feelings can be helpful to caregivers and others who spend time with them.

“I think what’s really important to recognize is that what the person is experiencing … is not something that they’re choosing,” she says. “It’s a result of the disease. And when caregivers hear that, it gives them a better perspective. The person isn’t being difficult or anxious because they want to be. They have no control over it.”

“It’s a complete lack of insight,” says Leavitt. “And while not everyone who has Alzheimer’s has anosognosia, there usually tends to be some degree of it.”

At the same time, anosognosia can be a blessing in disguise for some people with Alzheimer’s, because being unaware of their deficits protects them from having negative feelings about themselves, according to Leavitt.

Coping With the Emotional Fallout

And knowledge can be power, because it makes it easier to come up with a game plan going forward. That, in turn, can help assuage the fear of the unknown and perhaps even dampen anger and other negative emotions. Here are a few things to do:

• Join a support group. People diagnosed with mild cognitive impairment or Alzheimer’s disease can benefit from sharing their emotions with other people affected by the disease, as can their caregivers. You can find a local support group for either condition through the Alzheimer’s Association, which also provides leads to online caregiver communities.
• Consider treatment. There’s no cure for mild cognitive impairment or Alzheimer’s, but there are medications that can help slow the progression. If you have the disease, you might also be able to participate in research and clinical trials for treatments that may ultimately be approved, which can be rewarding. “People [who join clinical trials] feel like they can do something positive with this life-altering diagnosis,” says Moreno. “The ability to be able to help find treatments or even a cure … can be a very empowering feeling.”
• Plan for the future. If you’re living with mild cognitive impairment or early stage Alzheimer’s, now is a good time to tell your family and friends how you want to be cared for in the future. “We know families are eventually going to be confronted with having to make some difficult decisions,” says Moreno. “And rather than having to question, ‘Am I making the right decision?’ they can feel confident that the decisions they’re making are actually the wishes of the person who is living with [Alzheimer’s].”

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Know, too, that life doesn’t have to stop after an Alzheimer’s diagnosis. “For some people, it really provides them the opportunity to just live the best life that they possibly can, for as long as they can,” says Moreno.

“Many people … slow down and enjoy the little things in life that we tend to forget about because we’re so busy every single day,” she says. “But getting this diagnosis gives them the opportunity to spend more time with family and friends and do the things that really bring joy and meaning to their life.”