Anosognosia

Anosognosia is a medical term for the condition where a person has a lack of insight or awareness into the condition they have. It is common among people living with a diagnosis of dementia. People with anosognosia are very likely to make light of their symptoms and resist treatment or help.
The term in Greek means” without knowledge of disease.”
Anosognosia occurs because of physical changes that are thought to occur in the right frontal lobe of the brain. It is NOT about “being stubborn” or in denial regarding their condition. You may notice that the person’s abilities are changing, however, it is very difficult to persuade them that they are no longer able to do some things when they don’t recognise that they are unwell.
This can create challenges for those who care about the person and health professionals who provide care.

A person with anosognosia is more likely to forget their dementia diagnosis and how it affects their day-to-day life.
They could have inaccurate self-estimates regarding how their day-to-day life looks like now and blame others for the problems they are experiencing.
They may have fluctuating levels of awareness about their condition and when they need help. This could place them with increased safety risks and a heightened vulnerability to people taking advantage of them.
Here are some examples of situations where anosognosia comes into play:
- Avoiding or refusing to discuss their condition with those close to them or Medical Professionals- this may present as angry or distressed outbursts or relationship changes with those close to them.
- Wanting to drive their car after their driver’s licence has been cancelled.
- Getting lost on a walk with a route they usually take but insisting that they have memorised the route.
- Struggling to cook recipes they have made regularly – but refusing help from others.
- Being scammed but believing that they have their “wits about them”.

1. HUGS

H – Honour the person’s perspective.

Seek to understand what the person believes or understands about themselves and the situation. Highlight the strengths the person has. i.e. What are they capable of. Look for what the person does well and provide opportunities to do those things and/or talk about them.

U – Use Empathy

Hold awareness that a person is not deliberately being difficult, they are unwell, and that the part of the brain that would help them know they need help is damaged.
Have compassion for yourself- supporting a person with anosognosia can be difficult.

G – Get alongside

Avoid using trigger words like “memory loss” or “dementia.”
Identify a family member/ friend/health professional that is trusted by the person to support, guide, advocate and /or have the more difficult conversations with e.g. stopping driving

S – Strategise interactions and support

Only ask questions the person can answer or assign a task that they can achieve. Simplify or modify tasks if needed.
Set up third party consent at the medical practice to enable open communication with whanau.
Set up EPOA with your lawyer.

2. Other things you can do to help.

Maintain the person’s independence for as long as safely possible.
Work at doing activities together, to help minimise feelings on their behalf, that you are “taking over”.
Acknowledge/Validate any emotions experienced. This can provide a sense of wellbeing and help to diffuse difficult situations.
Don’t take things personally.
Rather than trying to convince the person that they are unwell and therefore unable to do what they use to do, listen to what they are saying.
Establish a workable routine that encourages safe independence for as long as possible.
Make dementia friendly changes around the home that facilitate successful completion of activities.
Continue to offer choices in as many aspects of daily life as possible.
Make sure the person’s GP is involved with their care. It is helpful to keep a running list of concerns or issues to discuss with him /her.
Contact your local Dementia New Zealand affiliate for support.
Be kind to yourself. Caring for someone who struggles with insight into their condition will have its moments, so it’s important that you have someone to talk to as you care for them.