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Why Do We React So Differently To A Diagnosis Of Dementia?

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Have you ever wondered why some people will acknowledge that they have dementia, yet others will clearly deny there is anything wrong? Why do some people argue with the diagnosis? Why do some people know they have dementia but refuse to tell anyone? Why do some discuss openly? Let's explore.

Why are some people so certain there is nothing wrong?

One reason some people are sure they do not have dementia (even with a confirmed diagnosis) can be due to where the damage is in the brain. When the damaged brain affects judgement, insight and the ability to understand and appreciate the consequences of circumstances, the person finds it difficult to connect and understand facts.

The person may be experiencing Anosognosia, which means they have no knowledge (or awareness) of the illness (the dementia). A person with Anosognosia will argue with things that may be the truth. It is important to note that person is not in denial -- he/she simply doesn't understand. The benefit of this lack of insight can be that some people with dementia do not have the fear of the future, because they don't believe anything is wrong.

This is hardest on the caregivers, especially in the early stages, because these people will not understand why you need to remove their driver's licence, help them to manage finances, enroll them in a day program or, eventually, suggest they move to a protective living environment (such as a nursing home). If you tell them that the suggestion is their best interest, they won't agree. They simply do not know, or believe, there is anything wrong.

Why do some people acknowledge they have dementia, either reluctantly or openly?

While some people begin the journey with impaired judgement, others begin with memory loss (e.g. -- Dementia of the Alzheimer's Type). (Note: others may have both memory loss and impaired judgement). Signs of memory loss, which is severe enough to affect daily functioning, might include forgetting how to get home or when to take medications.

Some are aware of the fact that they are forgetting things, but may not want to admit it, while others are anxious to find out what is wrong so they can create plans for their future. (Note: When insight is spared in the early stages they have the ability to consider what might happen in the future).

Imagine what it must be like to think you might have some form of dementia. This is a frightening realization, and explains why some will want to avoid knowing more (because they are afraid of what the future holds) and others want to know what is going on (because they like to plan).

If you know people who are significantly more forgetful than they had been in the past, it is time for an assessment. Fear may prevent some people from making an appointment for an assessment or from telling anyone about what they think is happening to their brain.

Conversely, if the person has no insight, he/she may have no idea that something is wrong, while those who support them grow increasingly concerned. Getting some people in for an assessment could be a challenge. Consider writing down some of your observations and sending them to the doctor prior to the visit, and, whenever possible, don't let the person go alone.

When a diagnosis is confirmed, a person who lacks judgement and insight will likely argue with the doctor's diagnosis and clearly state that there is nothing wrong. The positive side of this scenario is that most of these people are not concerned about their future.

For those that begin the journey with memory loss, there may be a number of different reactions that could occur. Some of these include:

• Relief -- A small percentage of people have reported that they feel relieved after receiving the diagnosis. They couldn't figure out what was wrong with them and once the diagnosis was confirmed they said they were able to move forward and make some plans and decisions about the future before their brain became any more impaired.
• Fear of stigma -- For many in the early stages there is concern that people will think they are "crazy" or "loony" or some other derogatory term (Note: These are their terms - not mine). When one has a broken arm there is no hesitation about sharing the fact that the arm is broken. When it is the brain that is broken many people fear being labelled. This needs to change!
• Denial and/or Anger -- This can't be happening to me. This isn't fair.
• Fear of telling anyone and fear of talking about the diagnosis. These people find it hard to tell anyone, including loved ones.
• Fear of what will happen next -- They will be worried about what the future holds. There may be concerns for both self and loved ones.

Loved ones often suspect, and may even know that there is a confirmed diagnosis, but they are unsure about sharing what they suspect or know. Open dialogue about the suspicions and/or diagnosis is referred to as "truth telling."

Many people who have been diagnosed with dementia have said they knew something was wrong but no one would talk about it. They said they felt alone and often frightened. Talk about both suspicions and diagnosis of dementia openly. The conversation could begin with the question," Are you having any difficulty with your memory lately?"

The response to this question should give you a good indication about how easy it is going to be to arrange an assessment and/or share the diagnosis. Open up the lines of communication -- with both the doctor and the person who may have dementia -- and be ready to discuss next steps, including fears, stigma and denial. The goal is to see the person beneath the dementia, expose abilities and help each person to live with dignity and be the best he/she can be.

Written by:

Gail Elliot, BASc,MA
Gerontologist & Dementia Specialist
Founder, DementiAbility Enterprises Inc.