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.
Being diagnosed with mild cognitive impairment (MCI) or Alzheimer’s disease can be emotionally fraught. People who receive this news have reported initial reactions ranging from a sense of relief to intense grief.
The same is true for friends and loved ones of people diagnosed with MCI, given it can progress to Alzheimer’s or another type of dementia – especially for those who are likely to become a primary caregiver if that happens.
Grieving the Decline of Cognitive Health
Memory lapses or the inability to complete simple tasks that once were rote can be concerning. And when it turns out those symptoms are not simply due to normal ageing, but indicate a neurological diagnosis such as MCI or even early-stage Alzheimer’s, the news can trigger a wide range of emotions.
In rare cases, the first reaction may be relief to finally have a reason for symptoms. 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 even, for some, a degree of optimism.
More often than not though, a diagnosis of MCI 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.
Other emotions that may arise include fear, anger, and sadness – fear of the unknown, anger at the disease, and sadness about the changes that may follow.
“There may be a sense of loss of the abilities that they’re experiencing today, but they may also be thinking about the future … especially, how the disease progresses. And they may be more reliant on a caregiver for their needs,” says Moreno. Depression is not only a common reaction to an Alzheimer’s diagnosis but also a risk factor for the disease.
When MCI Progresses to Dementia
Over time, a person whose MCI progresses to Alzheimer’s, the most common type of dementia, will likely experience changes in perception and personality. Due to the deterioration of neurons in the hippocampus — the area of the brain responsible for memories and, to some extent, emotional behaviour, people with Alzheimer’s have trouble recognising emotions in others, which may interfere with the ability to empathise and socialise.
As someone with Alzheimer’s loses awareness, they may also become more easily upset, agitated, or fearful, withdraw, or show signs of depression. Other times, they may lash out or become suspicious of other people -even those they’re close to.
Other research shows that even if a person with Alzheimer’s doesn’t remember why they’re feeling a particular way, that emotion may linger. They may feel happy or sad for seemingly no reason.
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 recognise 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.”
As many as 81 percent of people with Alzheimer’s disease also develop anosognosia, a neurological condition characterised by a lack of awareness of one’s own illness.
“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.”
People who have anosognosia may not seek treatment or may be resistant to treatment, which can also pose difficulties for their caregivers.
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
As difficult as it may be to hear that you or a loved one has any degree of cognitive decline, “There are benefits to getting an early and accurate diagnosis,” says Moreno. It’s also worth noting that MCI doesn’t always lead to Alzheimer’s. Some research suggests it only happens 10 to 15 percent of the time. Knowing that should help soften initial negative reactions.
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 other things you can do:
- Join a support group
People diagnosed with MCI 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 groupfor either condition through the Alzheimer’s Association, which also provides leads to online caregiver communities. (In Australia, try Dementia Australia, Ed.)
- Consider treatment
There’s no cure for MCI 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 MCI 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].”Know too, that life doesn’t have to stop after an Alzheimer’s diagnosis. “For some people, it really provides them with 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.”SOURCE: Everyday Health
