By Lisa Brousseau, MSW, RSW
Watch our “Your Questions Answered” video on anosognosia – loss of awareness3 min. 12 sec.
Witnessing someone progressively deteriorate is one of the challenging and painful parts of caring for a family member with dementia. You may find that when you try and discuss their changes in memory and ability, the person with dementia will become defensive, agitated, depressed and deny that anything is wrong. This can cause equally strong emotions in you, as you find yourself feeling worried for the person’s safety; frustrated, and unsure of how to cope. It’s as though the person with dementia has no idea that they are showing any symptoms and that their abilities are changing. What is really going on?
Doesn’t the person know that they have dementia?They may not. What can be perceived as denial or being stubborn can actually be a lack of awareness that there are any deficits. The medical term for this is “anosognosia” and it means “without knowledge of disease”. When anosognosia occurs there is a limited ability to have insight into ones true abilities. This can be selective or complete, and it can impact their memory, general thinking skills, emotions and physical abilities. This is a neurological problem resulting in damage to certain parts of the brain. As a result, the person you are caring for may not be able recognize the symptoms of dementia because:
- They may have forgotten the diagnosis due to the effects dementia can have on their memory (amnesia) and so will not have insight into any dementia related symptoms.
- They are not aware of the impact that dementia related symptoms have had on their day to day life and may lack the awareness to understand that they cannot manage independently.
Examples of what “Anosognosia” can look like when you’re providing care for someone with dementia:
- My mom insists that she can drive even though her doctor had to take her license away. She will often ask me where the car keys are and will become sad and upset when I tell her she can’t drive anymore.
- My wife loves hosting dinner parties and cooking elaborate meals for our guests. Since she has been diagnosed with Alzheimer’s disease, I have noticed that she often mixes up recipes and can’t manage the way she used to but she won’t let me help her and becomes angry when I offer.
- My husband enjoys walking in the ravines near our home but he recently got lost and it was a very stressful situation for me. He doesn’t seem to appreciate this and will try and leave the house daily for his usual walk. He isn’t listening to me and we end up arguing.
How do you cope with anosognosia?
Things you should remember:
- A person with dementia can have fluctuating levels of awareness regarding their condition.
- Anosognosia is not being in denial or being stubborn. It is a condition that can affect the brain on a neurological level.
- A lack of awareness in one area may not mean a lack of awareness in another. For example, a person may recognize their mobility is declining and agree to use a cane but may lack the awareness to know they can no longer use the stove.
Tips and strategies on how to respond to anosognosia
Adapting activities of daily living:
- Allow the person you are caring for to do the things they are still able to do safely. For example, if they are still able to fold laundry, let them. Or provide them with clothing to fold that it doesn’t matter how it’s folded such as towels.
- If they are used to paying the bills by cheque, provide an old cheque book that they can use so they can still engage in the behaviour.
- Suggest that you engage in activities together. For example, cook a recipe together and have the person engage in ways they are still able to.
Coping and communication strategies:
- Don’t take it personally: Anosognosia can cause the person with dementia to say hurtful things. As a difficult as it can be, try to remember that it is the disease talking and don’t take it personally.
- Is it safe or unsafe?: Before you intervene, ask yourself if what the person is doing is unsafe. If it’s not unsafe, you can decide not to intervene.
- Connect with their emotions, rather than reasoning: You cannot reason with someone who has anosognosia, so as tempting as it can be, don’t try and convince the person with dementia to see things from your perspective. Instead, try and connect with the person’s emotions.
- Check your emotions first: If the person with dementia is about to engage in an activity that puts their safety at risk, be aware of your own emotions. Take a moment to regulate yourself before you engage.
- Agree, stretch the truth, and distract: For example, if the person with dementia is angry that they cannot drive, empathize with their anger (agree it’s difficult), say the car is in the shop for repairs (stretch the truth), and suggest an activity you know they would enjoy (distract).
By Lisa Brousseau, MSW, RSW
Mental Health Clinician
Cyril, Dorothy, Joel and Jill Reitman Centre for Alzheimer’s Support and Training & Outpatient Geriatric Psychiatry
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