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Are Dementia Patients Aware Of Their Condition

Stage : Moderate Dementia

Through The Eyes of Someone with Alzheimer’s

Patients in stage 5 need some assistance in order to carry out their daily lives. The main sign for stage 5 dementia is the inability to remember major details such as the name of a close family member or a home address. Patients may become disoriented about the time and place, have trouble making decisions, and forget basic information about themselves, such as a telephone number or address.

While moderate dementia can interfere with basic functioning, patients at this stage do not need assistance with basic functions such as using the bathroom or eating. Patients also still have the ability to remember their own names and generally the names of spouses and children.

What Are The Main Types Of Dementia

Alzheimers disease is the most common cause of dementia, accounting for around 2 out of every 3 of cases in older people. Vascular dementia is another common form, while dementia with Lewy bodies and frontotemporal dementia are less common.

It is possible to have more than one type of dementia at the same time. Alzheimers is sometimes seen with vascular dementia or dementia with Lewy bodies. You might hear this called mixed dementia.

The symptoms of dementia vary depending on the disease, or diseases, causing it. You can read more about the symptoms associated with different types of dementia on the Alzheimers Society website .

What Do People In Advanced Stages Really See

My uncle did not have Alzheimer’s that we knew of, though after several strokes, he did suffer from some type of dementia, likely vascular. He would sit on the porch of the nursing home where he spent his last years, often calling out his deceased wife’s name. His plaintive calls were painful to hear. “Marion! Marion!” It was heartbreaking. The image that struck me was that he seemed to be physically reaching toward something.

I sat with him during his final hours. The nearer to death he got, the more he reached out. Repeatedly, he’d grab outward to what appeared to be thin air. Did he see or hear something I didn’t?

I often wonder what those in the advanced stages who mutely stare into space are seeing. Something? Nothing? Some would say there is not enough left in their shrunken brain to have thoughts that their motions are merely basic instincts such as a response to pain. Perhaps, but personally, I would not be comfortable making that assumption.

For that reason, I advise people to watch what they say around these folks who have lived a full life, but cannot now express their feelings. I advise them to watch their body language, as their agitation or anger may transfer to the person for whom they are caring. I advise them to remember that this person, regardless of their inability to communicate, is still a person, nothing less.

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Diseases Such As Alzheimers Disease Cause Nerve Cells To Die Damaging The Structure And Chemistry Of The Brain

There are lots of other causes and no two types of dementia are the same. In different types of dementia there is damage to different parts of the brain.

Other types of dementia include:

Alzheimers disease tends to start slowly and progress gradually. Vascular dementia after a stroke often progresses in a stepped way. This means that symptoms are stable for a while and then suddenly get worse.

Everyone experiences dementia in their own way. Lots of things can affect this, including the persons attitude to their diagnosis and their physical health. Other factors include the relationships they have with friends and family, the treatment and support they get, and their surroundings.

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Things Not To Say To Someone With Dementia

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Speaking to an elderly loved one with dementia can be difficult and emotionally draining. Alzheimers and dementia can lead to conversations that dont make sense, are inappropriate or uncomfortable, and may upset a family caregiver. However, over time, its important to adapt to the seniors behavior, and understand that their condition doesnt change who they are.

For senior caregivers, its important to always respond with patience. Here are some things to remember not to say to someone with dementia, and what you can say instead.

1. Youre wrong

For experienced caregivers, this one may seem evident. However, for someone who hasnt dealt with loss of cognitive function before, it can be hard to go along with something a loved one says that clearly isnt true. Theres no benefit to arguing, though, and its best to avoid upsetting a senior with dementia, who is already in a vulnerable emotional state due to confusion.

Instead, change the subject.

Its best to distract, not disagree. If an elderly loved one makes a wrong comment, dont try to fight them on it just change the subject and talk about something else ideally, something pleasant, to change their focus. There are plenty of things not to say to someone with dementia, but if theres one to remember, its anything that sounds like youre wrong.

2. Do you remember?

Instead, say: I remember

3. They passed away.


4. I told you

Instead, repeat what you said.

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How To Tell The Patient

James McKillop , who has dementia, said: Being told of the diagnosis at the right time, in the right place, by the right person who has thoughtfully allowed plenty of time for explanations and any questions is essential. The right time can be difficult to establish, but a sooner-rather-than-later approach will give the person the opportunity to process the information and to begin considering care options while cognition allows.

The pace at which information is given may be more important. Some people may find it easier to deal with this on a step-by-step basis, while others will prefer to know everything as soon as possible so their future can be planned. This is likely to be difficult as the progression of the disease varies between individuals, and not everyone with a diagnosis of dementia is likely to experience all the same events as the illness progresses.

Professionals may be inclined to put pressure on patients to consider their prognosis while they are able to make informed decisions. The dilemma for the professional is that they need information from the person about their preferences for future care while they are cognitively able to provide it.

According To New Research Anosognosia May Be Used To Predict Whether Patients With Mild Cognitive Impairment Will Progress To Alzheimers Disease

Anosognosia describes the inability to recognize that one is experiencing a mental illness. It is most well-known in schizophrenia, where patients frequently cannot acknowledge that their delusions are the result of a mental condition and not based in reality. However, anosognosia can also occur with dementias, such as Alzheimers disease. In later stages of the disease, people with Alzheimers may lose their ability to recognize their own cognitive deficits.

In a paper published this week in Neurology, researchers from McGill University wanted to assess whether anosognosia could be used to predict whether patients with mild cognitive impairment would later progress to Alzheimers disease. Mild cognitive impairment is a condition that affects nearly 20% of adults over 65. It is characterized by memory problems that are noticeable but not severe enough to interfere with daily life. Some people with MCI later progress to Alzheimers disease, while others do not, and we currently do not have a reliable method to predict whether a person with MCI will develop Alzheimers.

Mild cognitive impairment sometimes progresses to Alzheimers disease or other types of dementia. Image Source

This fMRI image shows the brain structures that make up the default mode network. Image Source

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What Information To Share

As a general guideline a number of things will need to be explained:

  • An explanation as to why the symptoms are occurring.
  • A discussion of the particular form of dementia, in terms that are appropriate to the persons level of understanding.
  • Any possible treatment for symptoms.
  • The specialised services and support programs that are available for people with dementia.

Informing a person that they have dementia is a serious matter, which needs to be handled with great sensitivity and dignity.

It can be a very stressful time for everyone. Dont forget to look after yourself.

Dementia Australia offers confidential counselling and support for families, carers and people with dementia.

Why Dementia Symptoms Fluctuate

Living with dementia

The common perception that symptoms come and go is an important area worthy of additional study. From what we know now, here are five considerations when thinking about why your loved one might experience increasing and decreasing signs of dementia.

  • Your loved one is in the early stages of dementia. The onset of dementia is confusing and frightening for patients and family alike. In early-stage dementia, memory problems and confusion come and go and may be accompanied by periods of completely normal behavior. As one writer puts it, One day the person may be calm, affectionate and functioning well, the next, forgetful, agitated, vague and withdrawn.
  • Co-existing medical conditions. Its very common for those who suffer from dementia to have other diseases that may worsen symptoms. For example, when an Alzheimers patient is also depressed, it may be that a deepening depression is to blame for emotional problems. Sometimes, treating the other condition will appear to improve Alzheimers. This is why its important for loved ones as well as the medical support team to not make any assumptions as to why the patient seems better or worse.
  • Maybe its not Alzheimers. There usually arent major changes in cognitive function from day to day for Alzheimers patients. On the other hand, its common with another form of dementia called Lewy body dementia. This under-recognized and under-diagnosed dementia can result in an apparent improvement in symptoms.
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    Stage : Mild Dementia

    At this stage, individuals may start to become socially withdrawn and show changes in personality and mood. Denial of symptoms as a defense mechanism is commonly seen in stage 4. Behaviors to look for include:

    • Difficulty remembering things about one’s personal history
    • Disorientation
    • Difficulty recognizing faces and people

    In stage 4 dementia, individuals have no trouble recognizing familiar faces or traveling to familiar locations. However, patients in this stage will often avoid challenging situations in order to hide symptoms or prevent stress or anxiety.

    Are Alzheimers Patients Aware Of Their Condition

    Does your parent or someone you know have Alzheimers? People with Alzheimers are more likely to be unaware about their illness, what is referred to as anosognosia and their memory loss, also known as mild cognitive impairment. A caregiver or a loved one of an Alzheimers patient is more likely to be distressed when the person experiences memory loss while the person doesnt feel or realize that they have any memory problems at all.

    It is this lack of awareness that creates a lot of burden on caregivers of people with Alzheimers.

    At the beginning of the disease, an Alzheimers patient may not be aware of their inability to remember. This is because he or she cannot rationalize their behavior. Once the disease begins to progress, patients become confronted with their shortcomings more and more and they can become angry or frustrated even if they cant place a finger on why.

    In the later stages of Alzheimers, the patient may not be lucid enough to be aware of the passage of time or what is going on around them. By that time, they may not be aware of their Alzheimers at all. A patient may complain to his or her loved ones and caregivers that they dont listen or that they are crazy because they know that they had forgotten dates and names.

    This forgetting makes them feel embarrassed and upset. But as the patient continues to deteriorate, they stop saying this because they stop being aware that there were names or dates to remember in the first place.

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    Patient Who Does Not Want To Know

    Nine participants did not want to know what was wrong with them or to receive any information about their illness. Although we did not asked them why, some of them spontaneously tried to explain their choice. Their motives seem to display a wide spectrum from probably full insight through more or less conscious decisions not to know the truth to complete denial of their illness .

    I could not find any clinical or demographic characteristics indicating those who would prefer to be told from those who would not.

    What Are Signs That Dementia Is Getting Worse

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    Moderate dementia increasing confusion or poor judgment. greater memory loss, including a loss of events in the more distant past. needing assistance with tasks, such as getting dressed, bathing, and grooming. significant personality and behavior changes, often caused by agitation and unfounded suspicion.

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    When Should A Dementia Patient Stop Eating

    But if the person appears indifferent to eating, or shows other signs of not wanting food turning away, not willingly opening their mouth, spitting food out, coughing or choking the document says attempts to feed should be stopped. And the guidelines tell caregivers to respect those actions.

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    Symptoms In The Later Stages Of Dementia

    As dementia progresses, memory loss and difficulties with communication often become severe. In the later stages, the person is likely to neglect their own health, and require constant care and attention.

    The most common symptoms of advanced dementia include:

    • memory problems people may not recognise close family and friends, or remember where they live or where they are
    • communication problems some people may eventually lose the ability to speak altogether. Using non-verbal means of communication, such as facial expressions, touch and gestures, can help
    • mobility problems many people become less able to move about unaided. Some may eventually become unable to walk and require a wheelchair or be confined to bed
    • behavioural problems a significant number of people will develop what are known as “behavioural and psychological symptoms of dementia”. These may include increased agitation, depressive symptoms, anxiety, wandering, aggression, or sometimes hallucinations
    • bladder incontinence is common in the later stages of dementia, and some people will also experience bowel incontinence
    • appetite and weight loss problems are both common in advanced dementia. Many people have trouble eating or swallowing, and this can lead to choking, chest infections and other problems. Alzheimer’s Society has a useful factsheet on eating and drinking

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    Anosognosia: When Dementia Patients Cant Recognize Their Impairment

    Are dementia patients aware of their condition?

    Family members and caregivers often ponder this question as their loved ones begin experiencing telltale symptoms like memory problems, poor judgement, confusion and behavior changes. In a similar vein, members often seek advice on the AgingCare Caregiver Forum as to why an aging parent or spouse is adamantly refusing care. For many seniors who have been diagnosed with Alzheimers disease or other forms of dementia, they refuse to stop driving, wont accept in-home care and resist the idea of moving to senior living because they are unaware that they need assistance. The sad truth is that a decline in mental function essentially affects ones ability to understand and acknowledge of the extent of ones impairment. This leaves dementia caregivers in a tricky spot.

    Who Should Tell The Patient

    Urvashiâs story: living with frontotemporal dementia

    Pratt and Wilkinson found that the impact of being given the diagnosis was more important than concern about who had disclosed it and in what circumstances. In fact, many patients could not remember who had given them the diagnosis, but they were able to remember how they had felt when they were told.

    The Alzheimers Disease Society identified the importance of the role of the GP in diagnosis. Since most people present to their GP with early symptoms and are likely to have a relationship with their doctor, GPs could fulfil the role of giving the diagnosis to the patient. However, Downes identifies that lack of knowledge may reduce the likelihood of the GP diagnosing dementia.

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    Stage : Moderately Severe Dementia

    When the patient begins to forget the names of their children, spouse, or primary caregivers, they are most likely entering stage 6 of dementia and will need full time care. In the sixth stage, patients are generally unaware of their surroundings, cannot recall recent events, and have skewed memories of their personal past. Caregivers and loved ones should watch for:

    • Delusional behavior

    Struggling To Adapt To Change

    For someone in the early stages of dementia, the experience can cause fear. Suddenly, they cant remember people they know or follow what others are saying. They cant remember why they went to the store, and they get lost on the way home.

    Because of this, they might crave routine and be afraid to try new experiences. Difficulty adapting to change is also a typical symptom of early dementia.

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    Stages Of Alzheimer Disease

    The stages of Alzheimer disease usually follow a progressive pattern. But each person moves through the disease stages in his or her own way. Knowing these stages helps healthcare providers and family members make decisions about how to care for someone who has Alzheimer disease.

    Preclinical stage. Changes in the brain begin years before a person shows any signs of the disease. This time period is called preclinical Alzheimer disease and it can last for years.

    Mild, early stage. Symptoms at this stage include mild forgetfulness. This may seem like the mild forgetfulness that often comes with aging. But it may also include problems with concentration.

    A person may still live independently at this stage, but may have problems:

    • Remembering a name

    • Staying organized

    • Managing money

    The person may be aware of memory lapses and their friends, family or neighbors may also notice these difficulties.

    Moderate, middle stage. This is typically the longest stage, usually lasting many years. At this stage, symptoms include:

    • Increasing trouble remembering events

    • Problems learning new things

    • Trouble with planning complicated events, like a dinner

    • Trouble remembering their own name, but not details about their own life, such as address and phone number

    • Problems with reading, writing, and working with numbers

    As the disease progresses, the person may:

    Physical changes may occur as well. Some people have sleep problems. Wandering away from home is often a concern.


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