Anosognosia and Dementia: Coping with a New Reality

When a loved one is diagnosed with dementia and starts showing signs like unusual behavior and memory loss, it can be a confusing and overwhelming time for families. Why can't Dad remember how to get to his doctor's office? Why is Mom acting so strangely in public? These changes can be hard to understand and navigate.

The reflexive action is to say, “You don’t remember where the doctor you’ve been seeing for 25 years is located?” Or, “Mom what are you doing?!”

Part of that reaction comes from the fact that humans are natural teachers. Dr. Tam Cummings, gerontologist and dementia expert notes that this innate desire to teach is why we will, almost without thinking, correct someone or fill in a name that someone has forgotten.

That is also why a family member becomes frustrated when correcting a loved one who continues to insist they have not said or done anything that needs correction. It is not that they are deciding to be stubborn. Nor are they joking around. It is a manifestation of the changes occurring in their brain as a result of Alzheimer’s disease or another form of dementia.

There is a name for what that person is experiencing. It’s called anosognosia.

What do caregivers need to know about anosognosia?

Because Alzheimer’s is a brain disease that gradually kills brain cells, access is cut off to the areas of the brain (think of millions of rolodex files) that enable an individual to recall names, places, experiences and faces. It also cuts off areas of the brain that govern behavior.

According to the Cleveland Clinic, experts estimate that anosognosia affects more than 80% of people with Alzheimer's disease.

What are the symptoms of anosognosia?

According to the Cleveland Clinic, an individual with anosognosia can’t do one or more of the following:

• Recognize that they have an illness or medical problem.
• Recognize the signs and symptoms of the condition that they experience.
• Connect their signs and symptoms to that condition.
• Understand and agree that the condition is serious and needs treatment.

In some cases, the individual may avoid the truth of their condition by rationalizing what’s happening to them or attempting to cover up symptoms. Some may confabulate, which means that their mind fills in the gaps with false memories. This can be done either consciously or without realizing it.

If you are a family caregiver, understanding the dynamics behind anosognosia will help make it easier to understand why mom may still think her deceased husband is still alive. Or why dad may take food off someone else’s plate, something he wouldn’t dream of doing before.

How can you improve communications with a loved one with dementia?

The first step to engaging successfully with a loved one with dementia is to lean into their reality. This is also the most challenging step, and one you can’t expect to take overnight. However, understanding that it is a brain disease and not your loved one’s fault can make taking that step a bit easier.

Here are five tips that will lead to better communication and engagement:

1. Resist the urge to quiz. This becomes easier when you understand the dynamics of anosognosia. You know that saying, “Don’t you remember?” will be fruitless and only cause stress to both of you.
2. Be supportive and agreeable. When dad talks about having dinner “yesterday” with a friend who has been deceased for years, resist the urge to correct him. Saying “Oh yes that must have been fun,” may feel awkward, but will support his reality and avoid unnecessary stress for both of you.
3. Re-introduce yourself. The individual’s short term memory loss may impact their facial recognition. Even if you were speaking with mom ten minutes ago, a more effective way to re-enter conversation might be, “Hi, mom! Your loving daughter is back!” or “Hi, your daughter Emily is back to ask if you need anything.”
4. Seek moments of common joy. The more positive engagement that occurs between you, the more likely there will be moments of meaningful connection. Enjoying a great meal together, watching an old movie, or going through old photographs. All can spark long-term memories or, at the very least, bring some laughter and conversation.
5. Reach out for help and support. Caregiving is not something to undertake without a support system. Reaching out to family members and trusted friends is important. When they offer to help, accept their help. Consider getting involved in a dementia support group. Take advantage of respite care so that you can take care of your own business.

Ongoing education is so important for family caregivers of individuals with dementia. We urge you to tune into Dr. Tam’s webinars on topics of dementia. The information you gain and tips you learn will help you navigate the road ahead.  Be sure to share your resources with family and friends so that they, too, can understand anosognosia and learn how to adjust their own communication skills and attitude.

Anosognosia is a difficult reality to accept for families. It involves weaving oneself into the new and very different reality of the loved one with dementia.

Our Anthem Memory Care communities encourage you to reach out to us for more information and to answer questions you may have. We know that the road ahead will be challenging. And we’re here to help!