My Alzheimer's Journey

Part 44 - Are People With Alzheimer's Aware Of Their Condition?

I have been curious if I will understand that I have Alzheimer’s as my disease progresses. Will I forget that I have this dreadful disease? Will I know that I am giving my caregiver a difficult time?

Apparently, I will forget that I have Alzheimer’s the same as I will likely forget who I am. There is a neuropsychiatric condition called anosognosia in which one is “unaware of an apparent disability or deficit.” In simple terms, anosognosia means a person cannot recognize their own condition or how serious it is. This condition dates back to 1914, when French neurologist, Joseph Babinski, first described anosognosia when talking about the obliviousness of those afflicted with left hemiplegia. Since Joseph Babinski’s discovery, numerous research projects have resulted in a much better understanding of anosognosia.

These anosognosia statistics surprised me:

• 60% of patients with mild cognitive impairment have anosognosia

• 81% of patients with Alzheimer’s dementia appear to have some form of anosognosia

The answer to the question about patient awareness is complex. There are many factors involved in addition to anosognosia. There is no simple answer, and the answer can vary from patient to patient.

Some patients may be fully aware of their disease, especially in the early stages. In the early stages of Alzheimer’s, many patients are relatively independent. I fall into that group. Like many early stage patients, I realized something was wrong before anyone else did. My initial symptoms included:

• Difficulty remembering recent events

• Trouble typing emails and texts (I often left words out)

• Occasionally unable to make rational decisions on complex matters

Denial is a common reaction to an Alzheimer’s diagnosis. Even before telling Linda and calling my doctor, I denied that anything was really wrong with me. I blamed the symptoms on age, stress, and depression. Once I was diagnosed with Alzheimer’s, my denial stopped. Many people strongly deny the diagnosis; thus, delaying treatment. Not me! I wanted to get started on treatment as soon as possible.

Anosognosia is different from denial. Denial is a way people cope with difficult news. In contrast, anosognosia happens due to physical changes in the brain. People with anosognosia may truly believe they don’t have Alzheimer’s, even when shown clear evidence. They might even forget their diagnosis due to memory loss caused by Alzheimer’s, leading them to avoid treatment.

As Alzheimer’s progresses, anosognosia becomes apparent to caregivers and medical providers. Anosognosia occurs on a spectrum. Some patients merely experience forgetfulness about their state or their condition in its early stages, while some exhibit varying levels of self-awareness and memory loss as their condition progresses. Some will even end up being completely unable to accept their diagnosis or even remember who they are at all.

In a future article, I will present my findings on how to treat anosognosia. Caring for someone with anosognosia is a difficult task.

UPDATE ON MY CONDITION:

• I had my fourth infusion yesterday. Except for the nurse being unable to locate a vein for the IV, it went well. The pain from the nurse missing the vein several times was nearly unbearable. It was so painful I almost came out of the chair. Fortunately, the nurse stopped poking me. She summoned a nurse with a very cool ultrasound system. A vein was quickly found, and the needle insertion was almost painfree.

• There were almost zero side effects from yesterday’s infusion. I assume my body has acclimated to Lecanemab. Happy dance!!

• My symptoms are slowly worsening. My memory has deteriorated. For example, Linda and I can discuss a current event and minutes later I can’t remember some of the details about the event. I am also noticing a decline in the clarity of my thoughts and my decision-making.

I wish you a happy Thanksgiving filled with love. This is a great time for friends and family to come together and celebrate memories and create new ones.