Anosognosia

FACTS

• Greek word meaning “no knowledge of disease”
• The person is cognitively unaware of their physical condition
• Can occur in people who have strokes, brain injury, psychiatric illnesses and dementia
• In dementia, it can occur anytime along the course of illness and almost always occurs late in the disease. When it occurs early in the disease it can cause behavior challenges.
• Can appear to be intentional but it is not; it is a part of the disease
• It is not denial, which is a coping mechanism
• People with anosognosia typically have a faster progression of dementia symptoms
• Anosognosia does not go away as the disease progresses

SYMPTOMS

• Absolute unawareness of memory loss
• Associated symptoms
  • Defensiveness
  • Agitation
  • Anger
• Other neuropsychiatric symptoms are more common as dementia progresses
  • Anxiety
  • Delusions
  • Agitation and aggression

IMPACT ON CAREGIVERS

• Difficulty following through with the medical plan causes frustration for the caregiver when the person refuses treatments or help.
• Feelings of inadequacy
• The presence of anosognosia often leads to caregivers feeling higher levels of stress as often their family and friends do not fully understand the unique challenges of the situation
• Other medical providers may be unaware of anosognosia especially if the person attends medical appointments independently.  This may lead to the medical provider inadvertently supporting false views held by the individual.

STRATEGIES

• With the medical provider, prioritize what aspects of the medical plan must be done and delay parts that do not need to be.
• Take a deep breath and bring calm and patience to the situation
• Remember the person with anosognosia did not choose this and can not control this.  The caregiver has to build a bridge and meet them where they are.
• Correcting and repeating will not convince the person that their view is incorrect
• Use LEAP
  • L – Listen
    • Without judgement and with respect
    • The goal is to bring down anger and build up trust
    • Listen to the words and the emotions associated with them
    • Listen to what is true to that person
    • Use statements that affirm the person is being heard
      • “Help me understand how you are feeling when you…”
      • “What I hear you saying is…”
      • Reflect back what was heard
      • Do not add “but” – “I heard what you said BUT…”
  • E – Empathize
    • Use statements of understanding
      • “I understand how you feel”
      • “If I were you I would feel the same way”
    • Using empathy creates a sense of being heard
  • A – Agree
    • Connection is the best strategy
    • Listen for common ground and use this to move forward with what needs to be done
      • “You said you do not need the medication because you are feeling better. I am thinking about a time when you stopped a medicine and you didn’t feel well. I wouldn’t want that to happen to you again”
      • “This medicine is to keep you as good as you can be”
    • Do not use the diagnosis of a memory loss to try and convince the person they need to do what you say.
    • Do not offer an opinion too quickly; unsolicited advice is not welcome
    • Apologize in advance when sharing opinion
      • “Can I tell you what I think – before I do, I am sorry but you might not like what I tell you”
    • Following through with instructions from the medical team may require creativity and will always require patience.
    • If there is an immediate safety issue you can still listen to how the person is feeling but you have to prevent the behavior such as unsafe driving.  Discuss safety issues with the provider for additional strategies.
    • It must be hard to feel that way – empathy can reduce anger and increase connection
    • If the situation is working then you do not need to confront memory glitches when they occur
  • P – Partner
    • Build trust
    • The personal relationship is more important than logic if safety is not an issue
    • Include in decisions when possible and as appropriate
    • Consider outside resources including support groups and information from NAMI, the National Alliance on Mental Illness.