Esther C. Kane, C.D.S.It’s a common misconception that people with dementia are not aware of their condition. In fact, many older people with dementia are very much aware of their declining abilities and the changes happening in their lives. It simply depends on the type of dementia and the stage they are in.
I remember working with patients who were keenly aware of their diagnosis and were striving to find ways to compensate. As an Occupational Therapist, I worked with my patients to help them cope and with their families to get them ready for the changes that were most likely to come.
In the early stages of dementia, people are often aware that something is wrong and may even be able to name their condition. As the disease progresses, they become less and less aware of their surroundings and what is happening to them.
There are many factors that can affect a person’s awareness of their dementia. The type of dementia they have, how severe their symptoms are, and whether they have had any prior experience with memory loss can all play a role.
Some people with dementia may never lose awareness of their condition, while others may only be aware in the early stages. There is no way to predict how each person will experience the disease.
If you are concerned about your own memory or that of a loved one, it is important to speak with a doctor. They can help you determine if there is cause for concern and provide you with resources and support.
Types Of Dementia
There are many different types of dementia, each with its own set of symptoms and effects.
Alzheimer’s Disease
Alzheimer’s disease is the most common cause of dementia, accounting for 60-80% of all cases. It is a progressive disease that slowly destroys memory and other cognitive abilities. Symptoms typically develop slowly and worsen over time.
Alzheimer’s disease is the most common type of dementia. Current estimates are that about 5.8 million people in the United States have Alzheimer’s disease and related dementias, including 5.6 million aged 65 and older and about 200,000 under age 65 with younger-onset Alzheimer’s.
Centers for Disease Control and Prevention
This slow and progressive decline in brain function can be really tough for both the person experiencing it and their loved ones. It’s hard to watch someone you care about slowly lose their memories and cognitive abilities. And it can be just as hard for the person with dementia or Alzheimer’s to come to terms with what’s happening to them.
Vascular Dementia
Vascular dementia is the second most common type of dementia, accounting for 5% – 10% of all cases. It occurs when there is damage to the brain’s blood vessels, which can lead to problems with thinking and memory. Symptoms usually develop suddenly after a stroke or series of mini-strokes.
There are several risk factors for vascular dementia, including medical conditions such as hypertension, diabetes, and heart disease. Additionally, lifestyle choices such as smoking and excessive alcohol consumption can increase the risk of developing vascular dementia.
People who have a family history of dementia are also at higher risk.
Nerve cells are important for sending messages throughout the brain. When these cells are damaged, it can lead to problems with thinking, memory, and other cognitive abilities.
Brain damage from vascular dementia occurs when there is not enough blood flow to the brain. This can happen from a blockage or rupture in the blood vessels. The damage can cause problems with how the brain functions.
Lewy Body Dementia
Lewy body dementia is the third most common form of dementia, accounting for 5% of all cases. It is a progressive disease that leads to changes in thinking, behavior, and movement. Symptoms can vary from person to person and often include hallucinations and delusions.
Lewy bodies are abnormal deposits of a protein called alpha-synuclein that build up in the brain. It is not yet known what causes these Lewy bodies to form.
Dementia with Lewy bodies is similar to both Alzheimer’s disease and Parkinson’s disease, which may explain why it is often misdiagnosed.
Frontotemporal Dementia
Frontotemporal dementia accounts for 10% – 20% of all dementia cases. It usually affects younger people, with the average age of onset being 45 to 64 years old. It is a progressive disease that leads to personality and behavior changes.
Frontotemporal dementia is an umbrella term for a group of brain disorders that primarily affect the frontal and temporal lobes of the brain. These areas of the brain are generally associated with personality, behavior and language.
Mayoclinic.com
Symptoms can include becoming more impulsive, losing interest in hobbies and activities, and changes in eating habits.
Mixed Dementia
Mixed dementia is a type of dementia that is caused by two or more different types of brain injury. This can include Alzheimer’s disease, vascular dementia, and frontotemporal dementia. Mixed dementia is the most common type of dementia, accounting for 22% of all cases.
With any form of dementia, it is important to seek medical help as soon as possible so that an accurate diagnosis can be made and appropriate treatment can be started.
There is no one-size-fits-all approach to managing dementia, but early intervention can help to slow the progression of the disease and improve quality of life.
What Are The Signs That A Person With Dementia Is Aware Of Their Condition?
There are several signs that a person with dementia is aware of their condition, including:
- Asking repetitive questions
- Depression or anxiety about their diagnosis of dementia
- Expressing concerns about memory loss
- Exhibiting changes in mood or behavior
- Withdrawing from social activities
- Sleeping longer and/or more often
Any of these signs may clue you in that the person with dementia is aware of their diagnosis and are experiencing some level of insight into their condition. If you notice any of these changes, it’s important to have a conversation with the person to see how they’re coping.
I would also recommend that you seek help from a therapist or your physician to help the person with dementia come to terms with their diagnosis. In some cases, medication may be necessary to help ease any anxiety or depression.
What Are The Signs That A Person With Dementia Is Not Aware Of Their Condition?
There are that a person with dementia is not aware of their condition, including:
- Denying memory loss or changes in abilities
- Blaming others for memory lapses or changes in behavior
- Making up stories to cover for memory loss (aka confabulating)
- Getting angry or agitated when confronted about memory loss or changes in abilities
- Exhibiting changes in behavior that are out of character
- Anosognosia (more information below on this)
Any of these signs are cause for concern and warrant a discussion with a doctor. If you notice any of these changes in yourself or a loved one, don’t hesitate to reach out for help.
What Is Anosognosia?
Anosognosia is a neurological condition in which people who have suffered some form of brain damage are unaware of the deficits that they have. It is most common after a stroke, but can also occur with other forms of brain injury, such as traumatic brain injury (TBI), dementia, or multiple sclerosis.
People with anosognosia often deny that they have any problems at all, and may become angry or defensive when others try to tell them otherwise. They may also believe that the changes they are experiencing are due to something else entirely, such as a temporary illness.
Anosognosia can make it very difficult for people to receive the help they need, as they may not even be aware that they have a problem. Family and friends may also find it difficult to cope, as they see the person they love struggling but are unable to do anything about it.
There is no known cure for anosognosia, but there are some treatments that may help. For example, occupational therapy can help people to regain some of their lost skills. medication can also be used to manage some of the symptoms, such as delusions or hallucinations.
If you think you or someone you know may have anosognosia, it is important to see a doctor or mental health professional as soon as possible. They will be able to carry out an assessment and provide you with the appropriate treatment.
How Much Does A Person With Dementia Understand?
It’s tough to say how much a person with dementia understands about their condition. It depends on the individual and how far along they are in the disease. In general, though, people with dementia tend to be aware that something is wrong.
They may not know the specifics of their diagnosis, but they realize that their memory and thinking skills are declining.
This can be a very difficult thing to come to terms with. Many people feel scared, confused, and frustrated as they watch their once-sharp minds start to slip away.
If you’re wondering how much your loved one with dementia understands, the best thing to do is talk to their doctor. They can give you more specific information about your loved one’s cognitive abilities and help you better understand what to expect in the coming months and years.
It also would not hurt to ask for an assessment from an Occupational Therapist. This could provide you with in-depth information on your loved one’s condition.
How Does A Person With Dementia See The World?
People with dementia often see the world differently than people without dementia. They may have trouble understanding what they see and may see things that are not really there.
What family caregivers need to understand is that this is not due to a change in their ocular vision. (their eyes). The change is in their brain and how their brain is processing the information that their eyes are sending to it.
A person with dementia may also have ‘visuospatial difficulties’, when the brain has problems processing information about 3D objects. This can affect a person’s spatial awareness or the ability to judge distances. They may have difficulties using stairs, parking a car or recognising objects.
Alzheimers.org.uk
I remember treating many, many seniors with these visuospatial difficulties. Unfortunately, it does get worse as the dementia gets worse.
Here are some examples of these problems:
- They may have trouble seeing objects that are far away. Or, they may see objects that are close up as being very large.
- They may see things that are not really there. This is called a visual hallucination. A person with dementia may see a person or an animal or even an object that is not there.
- They may not be able to tell the difference between a door and a window, or a person and a chair.
- They may not be able to perceive colors and light.
- They may begin having eye to hand coordination. This can make it difficult to eat, to button their shirt, etc.
All of these changes can make it hard for a person with dementia to do everyday activities, like reading, cooking, and driving.
There are some things that you can do to help them with their visuospatial problems. Here are some tips:
- If they are aware of their dementia, you can try to help them to recognize any mistake they make (gently). For example if they believe they are opening a door but they reach for a chair.
- Assure your loved one that we all make mistakes, it’s called being human.
- Do not move any furniture or objects in their living space. They may begin to rely on their memory of their space vs. their perception.
- When friends and family come by, ask them to introduce themselves by name or you can even go as far as wearing name tags.
- If need be, mention what each silverware, glass, plate is (tactfully). You could say something like, “I need to use my fork to eat the chicken on this dinner plate.“
- Be very careful (or simply avoid) introducing anything new such as a game or craft, etc. Just keep up with any tasks and activities they have been doing for the past few years.
- Reduce visual clutter and make sure that there is plenty of light in their living spaces.
- Be careful of shadows. I remember a patient of mine who would constantly step over shadows because he believed they were holes in the ground.
- Be patient with your loved one. They may have trouble believing you vs. what they believe they are seeing.
Do Dementia Patients Know What They Are Saying?
It’s a question that family members and caregivers of dementia patients often ask themselves – do they understand what their loved ones are saying? The answer, unfortunately, is not always clear.
One of the biggest hurdles I had as an Occupational Therapist was trying to get the family to understand (and believe) that their senior loved one was not always aware of what they were saying out loud.
Anyone who’s spent time with an elderly relative or friend with cognitive decline knows that venturing out into the world can be a bit of a minefield. Even simple tasks like going to the grocery store or the doctor’s office can often devolve into embarrassing or even cringe-worthy situations.
It’s not just that elders with cognitive decline may say or do inappropriate things in public – though that certainly happens – but they may also have difficulty understanding and following simple instructions or directions.
This can lead to frustration on both their part and the part of caregivers or loved ones who are trying to help them.
Family members, in my experience, often take what is said to them verbatim. This could lead to them being angry or hurt. But the truth of the matter is that their loved one with dementia simply is not aware of what she is saying.
It’s important for caregivers to remember that their loved ones are not necessarily aware of the things they’re saying. This can help them to be more patient and understanding when their loved one is having a difficult day.
Dementia Can Severely Impede Communication
People with dementia often have difficulty finding the right word, which can be frustrating for both them and their loved ones. However, it is important to be patient and understand that this is a common symptom of the condition.
Dementia is a degenerative disease that affects the brain, and can cause problems with thinking, memory, and speech. As the disease progresses, patients can experience a decline in their ability to communicate.
There are a few things to keep in mind when trying to communicate with a dementia patient.
- It’s important to be patient and understanding.
- Try to focus on simple words and phrases.
- Be prepared for the conversation to take some unexpected turns.
- Go with the flow of your senior loved one’s train of thought.
- Avoid correcting them or “bringing them to reality”. What they are saying and thinking IS their reality.
With a little patience and understanding, you can still have meaningful conversations with your loved one, even if they are living with dementia.
What Are The 7 Stages Of Dementia?
Dementia is a broad term used to describe a decline in mental ability. This can be due to a variety of different causes, but the result is typically an impairment in memory, communication, and other cognitive skills.
There are seven recognized stages of dementia, each with its own set of symptoms and challenges. This is known as the Global Deterioration Scale (GDS).
The seven Clinical Stages of Alzheimer’s disease, also known as the Global Deterioration Scale (GDS), was developed by Dr. Barry Reisberg, Director of the Fisher Alzheimer’s Disease Education and Research program at NYU Grossman School of Medicine.
Fisher Center for Alzheimer’s
These stages range from mild to severe, and the progression of dementia can vary greatly from one person to the next.
Stage 1: The early stages of dementia can be deceptively normal. Patients may seem fine, able to care for themselves and others as they always have. They don’t struggle in any part of their everyday lives. But beneath the surface, small changes are happening.
Some of the early signs of dementia include:
- trouble recalling events or names of familiar people.
- withdrawing from social activities.
- problems concentrating.
- changes in mood.
- confusion about time and place
If you notice these changes in someone you know, it’s important to encourage them to see a doctor. Early diagnosis and treatment of dementia can help delay the progression of the disease and improve the quality of life for patients and their families.
Stage 2: One of the first places where the symptoms of dementia begin to manifest is in what’s known as “instrumental activities of daily living,” or IADLs. These are the skills we use to take care of ourselves and our homes on a day-to-day basis, like cooking, driving, and handling finances.
In the early stages of dementia, a person might start to struggle with these daily tasks. They might show signs of mild cognitive impairment such as forgetting where they left things, or have trouble following a recipe. These symptoms may not be severe at first, and they can be easily dismissed as forgetfulness.
But if someone is showing signs of decline in IADLs, it’s important to take notice and seek out a diagnosis from a medical professional.
Stage 3: By the third stage, patients have noticeably decreased functioning and if they’re still employed, their work performance has also declined. This is something that will be noticeable to those around them, whether it’s their boss or colleagues.
Even simple tasks like traveling to new places can become much more difficult as they experience confusion and other difficulties. It’s important to be patient and understanding with those going through this stage, as it can be both frustrating and painful for them.
With the right support, however, they can still live fulfilling lives.
Stage 4: Everyday activities that were once simple become increasingly difficult for those in Stage 4 dementia. Something as seemingly innocuous as balancing a checkbook can become an insurmountable challenge.
More complex tasks, such as cooking a meal from start to finish, are also beyond the scope of those in the later stages of dementia. Even activities that bring joy, like reading a favorite book or playing a musical instrument, can become frustrating and difficult.
The cognitive decline associated with dementia makes it hard for those in Stage 4 to retain new information or follow simple instructions. As the disease progresses, patients in Stage 4 will find it harder and harder to communicate their needs and wants to loved ones.
This can be an immensely frustrating and isolating experience. With patience and understanding, however, loved ones can continue to play an important role in the lives of those with dementia, providing support, love, and companionship during this difficult time.
Stage 5: When someone reaches Stage 5 of dementia, they are in the later stages of their decline. This means that they may no longer be able to pick out clothing that is appropriate for occasions.
You may need to help them choose their outfit, but it is important to let them do as much as they can on their own. Even though they may not be able to dress themselves as well as they used to, the other issues that were present in the earlier stages have not disappeared.
It is important to be patient and understanding with someone in Stage 5, as they are going through a lot of changes.
Stage 6: One of the most difficult aspects of watching a loved one succumb to dementia is witnessing the gradual loss of independence. In the late stages of the disease, patients often lose the ability to dress, bathe, and groom themselves.
They may also become incontinent, and unable to feed or care for themselves in any way. While it can be painful to see a loved one in this state, it is important to remember that they are not suffering.
The vast majority of dementia patients remain aware of their surroundings and are just as capable of experiencing joy and love as they were before the disease took hold.
As their caregivers, it is our job to make sure they are comfortable and safe, and to cherish the time we have left with them.
Stage 7: At this stage, it’s important to make sure that your loved one is as comfortable as possible. This may mean contacting hospice to help manage their pain.
Your loved one may also lose their ability to communicate effectively. They may not be able to remember how to do simple things like sit up or walk. It’s important to be patient and try to understand what they’re trying to say.
They may also have a flat affect, which means they won’t show any facial expressions. This doesn’t mean they don’t care about what’s happening, they just may not have the energy to express themselves.
Try to spend time with them and let them know you love them.
While there is no known cure for any type of dementia, there are treatments available that can help manage the symptoms and slow the progression of the disease.
These include medications, cognitive and behavioral therapies, and assistance with activities of daily living. With early diagnosis and treatment, people with dementia can enjoy a better quality of life for a longer period of time.
Should You Remind Someone They Have Dementia?
The answer to this question really depends on the person with dementia, the stage they are in and the circumstances. So, the short answer could be “maybe”.
I personally never reminded or spoke to my patients or any family member with dementia about the disease. My personal opinion is that if they ask questions about it or want to talk about it then I would certainly answer, but otherwise, what was the point of bringing it up?
I kept the content of our conversations focused on whatever my patient / loved one wanted to talk about.
But I understand that it can be difficult to know how to act around someone with dementia. You might feel like you need to treat them differently or tiptoe around them, but that’s not necessarily the case.
In fact, I do believe that many people with dementia appreciate being treated the same as everyone else.
Of course, there are certain things you should keep in mind when interacting with someone with dementia.
- Use a calm and gentle voice when speaking with him/her
- Be direct and precise. Don’t say something like “Can you give me the spoon that’s in the kitchen.” Instead, say “Can you give me the small spoon that’s on the kitchen counter next to the coffee pot.“
- Avoid questions or anything that has too many choices. Keep it very simple.
- Make eye contact with him/her when you are speaking.
- Avoid pronouns. Again, you want to be precise. So instead of saying “He went to the store.” You can say “Robert went to the store.” Even if you were JUST talking about Robert, do not assume that your senior loved one will be able to put two and two together.
While there’s no one-size-fits-all approach to interacting with someone with dementia, there are some general guidelines you can follow. By keeping these in mind, you can help make the experience more positive for both you and the person with dementia.
Read more about how to talk to someone who has dementia.
How Do You Tell Your Parent They Have Dementia?
It can be difficult to have a conversation with a parent about dementia, especially if they are in the early stages and may not yet be showing symptoms. Here are a few tips to help you approach this sensitive topic:
1. Choose a time when both of you are calm and relaxed. This is not a conversation that should be had in a hurry.
2. Explain what you’ve been noticing and why you’re concerned. Be specific about the changes you’ve observed and how they’ve affected your parent.
3. Reassure your parent that you still love and support them. This is a difficult time for both of you, and it’s important that they know you’re there for them.
4. Listen to your parent’s concerns and answer any questions they have. They may be feeling scared or confused about the changes they’re experiencing, so it’s important to be open and understanding.
5. Encourage your parent to see their doctor. Dementia is a progressive condition, so it’s important to get a diagnosis and begin treatment as soon as possible.
6. Offer your help and support. Let your parent know that you’re there for them and offer to help in any way you can.
7. Be patient. This is a difficult time for both of you, so it’s important to be patient and understanding. Dementia can be a long and difficult journey, but you’re not in it alone.
Understand The Stages Of Grief
Most seniors who have just been diagnosed with dementia or Alzheimer’s disease will or should most likely go through the stages of grief. This is very normal and expected.
The 5 Stages Of Grief Over A Dementia Diagnosis
1. Denial – The first stage of dementia is often denial. The person with dementia may be in denial about their diagnosis, and they may try to downplay the symptoms they are experiencing. Family members may also be in denial about the situation. It is important to be patient and understanding during this stage.
2. Anger – As the disease progresses, the person with dementia may become angry. They may be angry at their diagnosis, at the way their life is changing, and at the people around them. It is important to remain calm and understanding during this stage.
3. Bargaining – During the bargaining stage, the person with dementia may try to make deals with themselves or with others. They may be trying to come to terms with their diagnosis and the changes that are happening in their life.
4. Depression – As the disease progresses, the person with dementia may become depressed. They may be grieving for the life they once had, and for the future they will never have. It is important to be supportive and understanding during this stage.
5. Acceptance – Eventually, the person with dementia will reach a point of acceptance. They may come to terms with their diagnosis and the changes that are happening in their life. This does not mean that they are happy about their situation, but rather that they have accepted it.
Where Can I Get More Information About Dementia?
The Alzheimer’s Association is a great resource for information about dementia. They have a 24/7 helpline that can answer your questions and connect you with resources in your area. You can also visit their website, which has a wealth of information about the disease, its symptoms, and how to cope with it.
If you are looking for more personal stories about living with dementia, the Dementia Diaries website is a great place to start. This site features first-person accounts from people all over the world who are living with dementia. You can also find practical tips and advice from caregivers and experts on how to cope with the disease.
There are also many Facebook groups that you can join that provide a great deal of help.
Books About Dementia or Alzheimer’s
There are many great books that you can add to your home library that can help you learn more about this disease and how to help your senior loved ones through it.
- When Waves Rise: Navigating Difficult Moments Associated with Dementia
- Alzheimer’s & Dementia for Dummies
- Understanding the Changing Brain
I wrote an article reviewing 38 books and some movies about Alzheimer’s so take a look at that as well for even more resources. – Click Here
Conclusion
The underlying cause of dementia is still not fully understood, but it is thought to be the result of damage to the brain cells. This damage can be caused by a number of things, including disease, injury, or simply the aging process.
Regardless of the cause, the result is typically a decline in cognitive abilities, and this can make it very difficult for the person to function on their own.
The main topic of this article is whether or not people with dementia are aware of their condition. While there is no clear answer, there are some indications that people with dementia may be aware of their decline.
For instance, many people with dementia express concerns about their memory and ability to think clearly. Additionally, some research suggests that people with dementia may have a better understanding of their condition than previously thought.
However, it is important to remember that each person with dementia is unique and their level of awareness may vary. If you are caring for someone with dementia, it is important to be patient and understanding, and to provide as much support as possible.
If you have a close friend or family member with dementia, you may be wondering how they are coping with the condition. It is important to remember that everyone experiences dementia differently, and so not everyone will be aware of their decline in the same way.
