Anosognosia is defined as a lack of awareness of an impairment. When the diagnosis is dementia, the lack of awareness becomes very challenging for a family caregiver. How does a person devoted to providing quality care for a loved one succeed if their care recipient cannot acknowledge that they are ill?

The forum is filled with people coming together to share valuable information and advice. We’ve compiled caregivers’ experiences with anosognosia and their best suggestions for handling a dementia patient’s fluctuating levels of awareness regarding their condition.

Self-Awareness Can Fluctuate with Dementia

“Both of my parents were diagnosed with Alzheimer’s in 2014. My mom (85) has been having memory problems longer than my dad (84). They were getting lost while driving and they weren’t paying bills, but none of these mishaps (they had been going on for a few years) were a wake-up call to them. At first we thought they were simply in denial, but the problems were happening too often for that to be the case. Their short-term memories had deteriorated to the point where they weren’t remembering any of these incidents. It was concluded that they weren’t aware of their conditions. They’re now in assisted living, much to the relief of all family and friends. Every time I call them, they say they like where they are but insist that they will be going back to their house in a few days and that they’re just fine. Fortunately, they don’t have a car and have to be signed out of the facility.” –BeamMeUp

“My mom read the brochure that came with her additional Alzheimer’s medication yesterday and she definitely refused to accept it. She said, ‘I DO NOT HAVE ALZHEIMER’S!’ Then she pointedly asked me if she has the disease. After a second of panic, I said as calmly as I could, ‘Mom, just take this new medicine. It will help you feel better. It is for a lot of different things, including your memory, and you will feel better in a little while.’ Then, as quick as she was to react, she said, ‘Okay,’ and that was it!” –Deeandfam1216

“My Mom is 94 and has moderate dementia. Especially early on in the disease, Mom was ‘aware’ of her memory problems. She would joke about her ‘terrible memory.’ Interestingly, though, she has never actually recognized her cognitive decline. There came a point when Mom could not figure out how to work the most common household appliances (the iron, hairdryer, TV remote, phones, etc.). In every single case, she complained that these things were broken. I guess the cognitive decline prevented her from seeing that she was the common denominator. All of the ‘broken’ things were in fine working order.” –TheBlackDogMina

“There are a number of reports and studies of how dementia is experienced. What we do know is that prior to diagnosis, some individuals experience uncertainty about what is causing the difficulty with their thought processes. Sometimes questioning a person can lead to emotional reactions, like fear and depression.

Here are a few of things to be aware of:

  • Don’t assume lack of awareness simply because a person has evidence of mental or cognitive impairment. Awareness may vary in its depth and breadth. Lack of awareness in one area may not mean there is not awareness in other areas.
  • Expect considerable variability in experience and mood over time within individuals. Differing reports on the variances of understanding from the same person over a short period of time doesn’t necessarily mean the reports are not accurate.
  • Be supportive to encourage openness and honesty. People who feel devalued by any questioning, or confused about their own thinking process, may downplay their problems so that they communicate their worthiness instead of their deficiencies.

If we are to increase understanding and reduce uncertainty experienced by people with dementia, we must fully sink ourselves into dealing with and truly understanding what is experienced and take a more thoughtful approach to their condition.” –GeriCareFinder

“My mother knew she was losing it. Most of the time she was in denial. Occasionally, when she did something that was obviously, even in her mind, not a smart thing to do, she would say, ‘I’m losing it.’ When she did that, it would break my heart because sometimes she would cry a little. It must have been so frightening to know she was not the same, and I could tell she felt helpless. Other times when she was not aware, she would very strongly argue about something she imagined and I could tell she truly believed what she was saying. Dementia is something we all fear because it is so sneaky.” –AmyGrace

“In the early stages of my mom’s age-related dementia (95!) she would comment about forgetting things and not doing things correctly. I told her we would help her and not to worry about it. As time passed, those comments and her awareness went away. During my mom’s journey, she was stuck in her late teens/early twenties. Helping her stay in HER present, I believe, also helped her remain calm and content. She spent her final years in a memory care center and told me stories of her adventures. She enjoyed telling them, and I enjoyed listening. I urge everyone to go with the flow.” –geewiz

“It is very difficult to deal with my husband because he continues to insist he can lead workshops and major events like he used to. He is always saying he’s going to call people to get things set up because he thinks there is nothing wrong with him except age-related memory loss at 78. I worry about when he tries to contact people and bring them in to work on these events with him. He can’t follow through, and when he does try to lead a group, he repeats himself constantly and gets off track. So far, he hasn’t been able to complete any of his plans. He forgets about them or gets distracted. But every time he starts talking about it, he gets so intense and I don’t know what to do if he really does call these people! I, too, thought he was just in denial because he couldn’t or didn’t want to face the concept of dementia, but now I’m thinking that this is probably anosognosia. Sometimes he acknowledges his memory loss, and it frustrates him greatly. Occasionally he will admit that it frightens him, but most of the time he thinks he is just fine.” –Medap1973

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“My mom is 76, requires 24/7 care, can’t be alone, and has moderate-to-severe Alzheimer’s. Make no mistake, though, she can sit up, look bright eyed, and have a conversation with you for really short periods of time. She demands to be sent back to her house, fiercely insists she can live alone and then starts in on being held hostage. She is incapable of understanding her disability anymore and denies having Alzheimer’s. She is so mixed up most of the time, but she comes across as totally confident and totally right about what she’s saying. Taking Mom out of the care center and bringing her home with me simply because she is very passionate about getting out of there would be the WRONG thing to do for her and for me. I have to work. I have kids. Our home is our sanctuary from life. I am not skilled or trained as a 24/7 caregiver for somebody on the edge of severe Alzheimer’s impairment. This is not like nursing somebody through the chicken pox. It does not get better, and it could go on for 10+ years.” –sandwich42plus

“Unfortunately, my mother’s pride gets in the way of me trying to help her. In her mind, there is nothing wrong with her, and she doesn’t have an incontinence problem. For example, I buy Depends Silhouettes and keep a box of them in her bathroom, but getting her to wear them is hard. I think removing all of her regular underwear is the only thing I can do. I just hope she won’t become combative and insist that we take her to buy more real underwear.” –New2Dementia

“Alzheimer’s symptoms come and go. One minute my husband knows where he is. An hour later, he is totally confused. After that, he doesn’t remember being confused. It’s easy to believe that someone with dementia is faking or trying to mislead you. If that’s what they were like before, then maybe they are. But for the most part, no one wants to fake such frightening symptoms!” –Jinx4740