Are Dementia Residents Aware of their Condition?

It’s common for someone with dementia to struggle to understand or accept their diagnosis. They might not even realise they’re having problems remembering things or doing everyday tasks, even when it’s clear to the people around them.

Dementia is a complex neurological disorder that affects millions of people worldwide. As we age, the risk of developing dementia increases, making it a prevalent concern in many nursing homes. One question that frequently arises is whether individuals with dementia are aware of their condition. In this article we will explore the different levels of awareness that dementia residents may have and shed light on this important topic.

The Awareness Spectrum

Dementia isn’t an on/off switch. How much a person understands about their condition can change a lot –  from day-to-day and as the disease progresses.  This is important to remember, as it affects how they experience life and the kind of support they need.

Early Stages

Sometimes, the first signs of dementia are actually noticing that something’s not quite right.  A person might realise they keep forgetting things, find it harder to do familiar tasks, or feel like their thoughts are jumbled.  Some people in the early stages worry about these changes and seek a diagnosis.  Understanding what’s happening can lead to getting important support and treatment early on.

Signs to look out for 

• Memory Lapses: More frequent forgetting of recent events, names, or where things are placed. Difficulty recalling appointments or conversations.
• Word-Finding Struggles: Trouble coming up with the right words in conversations or having noticeable pauses while speaking.
• Challenges with Tasks: Difficulty completing familiar tasks at home or work (managing finances, cooking, following instructions).
• Disorientation: Getting lost in familiar places or getting confused about the date or time of day.
• Reduced Judgement: Making poor decisions or showing less interest in usual activities.
• Personality Changes: Becoming more irritable, withdrawn, anxious, or suspicious.

Mid-Stages

As dementia progresses, it usually becomes harder to recognise what’s changing.  Someone might not realise when they forget things or struggle to complete tasks that used to be easy. This changing awareness can be difficult to navigate for everyone involved. The person with dementia may feel confused or frustrated when they don’t understand why things are harder. Family and caregivers might feel at a loss when trying to provide support that seems to get rejected.

Sign to look out for

• Increased Memory Loss: Significant difficulty remembering recent events, familiar people, or even personal history.
• Confusion: Struggling to understand what’s happening around them, difficulty recognizing places or faces. May get lost in their own home.
• Communication Problems: Severe difficulty finding the right words, understanding others, or following conversations.
• Needing Help with Daily Life: Increasing need for assistance with dressing, bathing, eating, and using the toilet.
• Sleep Disturbances: Changes in sleep patterns, restlessness at night, or sleeping more during the day.
• Behavioural Changes: Increased agitation, wandering, repeating questions, or becoming verbally or physically aggressive.
• Hallucinations or Delusions: Seeing, hearing, or believing things that are not real.

Anosognosia: More Than Just Denial

When someone with dementia seems completely unaware of their challenges, it’s easy to mistake this for denial. However, there’s often a neurological reason behind this lack of awareness called anosognosia (which means “to not know a disease”).

How Anosognosia Works:  Anosognosia is caused by damage to specific parts of the brain involved in self-awareness and judgement. It’s as if the brain loses its ability to register the problems that are happening.  A person with anosognosia isn’t choosing to ignore their difficulties, they genuinely don’t perceive them.

What This Looks Like: Anosognosia can affect different areas. Someone might be unaware of memory problems, trouble with daily tasks, or even changes in their personality or behaviour.  They might come up with excuses to explain away difficulties (“I’m just tired”) or get defensive if confronted with their challenges.   It’s important to remember that this defensiveness isn’t intentional –  they truly believe they’re fine.

Fluctuating Awareness: Even with anosognosia, awareness isn’t static.  A person might have moments where they seem to realise something is wrong, only to become unaware again later.  This can be very confusing for loved ones.

The following could be signs of concern;

• Dismissing Concerns: The person may brush off concerns raised by family or friends about their memory, behaviour, or ability to function. They might attribute forgetfulness to being tired or stressed.
• Confabulation: When challenged about memory problems, the person might unknowingly make up stories or explanations to fill in the gaps. These stories might involve events that didn’t happen or misremembered details.
• Lack of Insight: The person may strongly insist they have no problems at all, even when presented with evidence of difficulties.
• Minimising Challenges: They might downplay the severity of issues, claiming they have always been that way or that it’s no different from anyone else their age.
• Defensiveness or Irritability: If loved ones express concern or try to point out problems, the person might become defensive, angry, or withdrawn.
• Accusatory Behaviour: They might develop false beliefs that others are hiding things from them or being deliberately difficult.

Important Notes:

• Anosognosia can fluctuate. Someone might have moments of seeming awareness followed by periods of unawareness again.
• Differentiating between true denial and anosognosia can be difficult. A medical evaluation is the best course of action for proper understanding.

Why Understanding Anosognosia Matters

Caregiver Support: Knowing about anosognosia helps families and caregivers understand that the person with dementia isn’t being stubborn or difficult on purpose. This can reduce frustration and help them develop more patient and supportive approaches.

Tailored Care Plans: Anosognosia needs to be factored into care plans. Forcing someone to confront what they can’t perceive usually backfires. Caregivers should focus on finding gentle ways to work around the deficits, ensuring safety and providing assistance without causing distress.

Safety Concerns: Anosognosia can pose safety risks. Someone who doesn’t realise their memory is failing might wander off, or someone who doesn’t acknowledge difficulties with driving might put themselves and others in danger. Understanding this helps families implement necessary safety measures without accusations or arguments.

Important Note: While anosognosia presents challenges, try to find ways to connect with the person behind the condition. Focus on their remaining abilities and strengths, find activities you can still enjoy together, and cherish the good moments amidst the difficulties of dementia.

Awareness Can Change Over Time

We often think of people with dementia as losing awareness of their condition, but that’s not always the case. A study in the International Journal of Geriatric Psychiatry showed that some people with mild-to-moderate dementia actually became more aware of their challenges over time. Researchers followed people with dementia for two years, finding that awareness isn’t just about how well someone’s brain is working. Other factors, like personality and the support they receive, seem to play a big role.

This study tells us a few important things:

• It’s important for carers and families to be flexible because how aware someone is of their dementia can shift.
• Doctors and nurses need to keep this in mind when developing care plans.
• We need more research to understand why awareness changes, so we can help people with dementia live the best quality life possible.

The Role of Carers and Support Systems

Caring for people with dementia takes a kind and individual approach. It’s vital for healthcare staff, carers, and families to understand how aware each person is of their condition, and change how they offer support accordingly. Here are some important ways to help those with dementia:

• Empathy and understanding: Building a supportive space filled with empathy and understanding helps people with dementia feel safe and cared for.
• Clear communication: Keeping your language simple, clear, and with repetition makes it easier for those with dementia to understand and reduces confusion.
• Validation and reassurance: Acknowledging how a person with dementia feels and what they’re experiencing helps calm any upset and offers them comfort.
• Person-centred care: Focusing on each person’s needs, what they like, and what they’re still able to do allows for care plans that respect them as individuals and give them a sense of independence.
• A safe space: Creating a safe and familiar environment with helpful cues and routines can really help someone with dementia feel secure.

Whether or not someone with dementia is aware of their condition is a tricky question. They might be aware in the early stages, but often this understanding fades as the disease progresses. Anosognosia, which means not being aware of your illness, can make things even more complicated. Understanding how aware someone is, and offering care that focuses on them as a person, is absolutely key in giving the best support possible for those living with dementia in care homes. When we create an environment based on empathy, straightforward communication, and reassurance, we can make life better and more comfortable for those with dementia.

Lidder Care takes great pride in delivering high-quality care for the elderly, respecting dignity and equality of choices to encourage independence in a safe environment. Both of our care homes in Nottinghamshire focus on person-centred care, with experienced, friendly staff that always put residents first. Have a question about dementia care? Get in touch today.