Dementia and Alzheimer’s disease are troubling conditions, and increasingly common issues for families to face. The numbers are stark - around 5.8 million people in the United States suffer from Alzheimer’s disease and other types of dementia.
Roughly 5.6 million of these dementia sufferers are over the age of 65, but there are nearly 200,000 people who suffer from early-onset Alzheimer’s as well.The number of people with dementia is growing, and estimates suggest that by 2060 there will be around 14 million people with Alzheimer’s disease in the US alone.
The responsibility for caring for those with dementia usually lands with the family, and while dementia care can be a deeply rewarding experience, it can take its toll emotionally too.
One of the hardest aspects of dementia and dementia care is that dementia patients often are unable to process or are unaware that they are suffering from a disease or condition. The cognitive impairment that causes all types of dementia also can lead patients to believe that nothing is wrong, causing anxiety and agitation, and making care a more difficult prospect.
In this article we are going to examine this phenomenon, and take a look at what you need to know to care for someone who is unaware that they have dementia.
Are dementia patients aware of their condition?
Many dementia patients are not aware of their condition. Memory loss and a loss of cognitive abilities are fundamental symptoms of Alzheimer’s disease and other types of dementia, which makes it extremely difficult for sufferers to realize that they are having problems, or to understand their condition.
People with Alzheimer’s will often rationalize away their slips and memory loss in the early stages of the disease, and as the condition progresses will suffer from forgetfulness and become less and less able to process what is happening to them.
This can create more stress for caregivers, as it adds an extra level of complexity to what is needed to provide appropriate care. If the patient is unable or unwilling to accept that they have a problem, they will not understand why they need care at all, and may be resistant or angry when confronted with their symptoms.
However, this lack of understanding or awareness should not be confused with denial. It is its own condition known as anosognosia, is common in a number of diseases (not just Alzheimer’s), and requires careful and specific treatment.
Anosognosia
What is anosognosia?
Anosognosia is a Greek word that can be loosely translated to mean ‘lack of awareness or insight’. It is a condition caused by damage to the brain or changes in brain chemistry that removes a patient’s ability to understand or even accept that they have a medical condition.
The way we form a mental picture of ourselves, our self-awareness, is an ongoing process throughout life. The frontal lobe of the brain takes in information constantly, and uses this to construct your personal image, and awareness of yourself and the world around you.
Damage or changes to the frontal lobe’s ability to take in or process information can stop this from working, which is what causes anosognosia.
Anosognosia occurs on a spectrum. Some patients merely experience forgetfulness about their state or their condition in its early stages, while some exhibit varying levels of self-awareness and memory loss as their condition progresses. Some will even end up being completely unable to accept their diagnosis or even remember who they are at all.
As anosognosia is a result of changes to the brain (and a very different thing to denial, for example), it is not something that will be fixed by evidence. Anosognosia sufferers can be presented by multiple diagnoses from people they trust, and will still be unable to accept that they have a problem.
Anosognosia is common in people with mental or neurological conditions. Estimates vary, but experts believe that up to 98% of people with schizophrenia will suffer from some level of anosognosia, and it will affect up to 81% of people with dementia in some way.
How to care for someone with anosognosia
Caring for someone with anosognosia is a difficult task. The condition is not easy to treat, and it can be extremely stressful and hard for the caregiver to cope. Part of the reason it is such a complex issue is the inherent complications of the symptoms - if the patient does not believe or will not accept that they are sick, then they are unlikely to accept treatment or care.
However, anosognosia can have significant knock-on effects. Sufferers may stop taking medication, or become belligerent or anxious, therefore it is vital to address it as quickly as possible and take action in the early stages of the symptoms.
Medication can help manage the condition - around 33% of sufferers who continue to take medication will experience improved self-awareness and a reduction in their inability to accept their diagnosis.
Therapy has been shown to achieve great results too, through a treatment called motivational enhancement therapy.
Ultimately, the best way to care for someone with anosognosia is not by continuing to attempt to convince them that they are ill. The best results come from a more roundabout approach - showing them other benefits of treatment with regards to other aspects of their life such as career goals or living independently, which can help persuade sufferers to remain in therapy or continue treatment.
As with most aspects of dementia care, staying calm and compassionate is the most important thing to do. There are certainly times when it could be counterproductive to attempt to forcefully convince a loved one that they are suffering from dementia, and therefore there are occasions when allowing them to remain unaware, and even lying to them could be justified. However, there are certain legal aspects to this as well, particularly when it comes to risk to the patient or to others around them. If this is the case, the patient may need to undergo care or treatment against their will.
Is Anosognosia the same as denial?
When someone is diagnosed with an illness, regardless of whether it is physical, neurological, or mental, a common response to the diagnosis is denial. As human beings we do not want to accept that something bad has happened to us, and denial is an extremely common reaction to bad news, and one of the main stages of grief.
However, anosognosia is a very different prospect to denial, and should not be treated in the same way.
Anosognosia is a result of damage to the brain, or changes in brain chemistry - it is a genuine medical condition, caused by something physical. Denial is psychological, an unwillingness to accept the reality of something, but caused only by our own emotional choices.
Being able to tell the difference between anosognosia and denial is difficult, but can be an extremely important aspect of dementia care.
The main symptom of anosognosia is confusion, a lack of understanding, and even a lack of awareness that there is a problem at all.
The best way to tell the difference between anosognosia and denial is to pay close attention to changes in personality before and after a diagnosis of dementia. If your loved one is prone to ignoring issues or refusing to accept bad news, then denial of their condition would fit with their existing personality. However, if their reaction to their diagnosis is at odds with how you might expect them to behave, then anosognosia is a possibility.
Caring for a loved one with dementia can be an extremely difficult process at the best of times, and it is only made harder by anosognosia. However, it s not something that anyone should have to go through alone.
Senior Helpers offer a wide variety of senior care services in the Orlando area, from in-home care to personalized care in an assisted living facility. Our tailored services can provide family carers with the support and assistance they need to provide the best level of treatment for their loved ones suffering from dementia, from companionship to in-depth specialized medical care.
To find out more about the care that Senior Helpers can provide, visit our website or get in touch directly, and we will do our best to help you provide all the care your loved ones need.