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Do People With Alzheimer’s Know They Have It

Things To Say To Someone With Alzheimers

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Seeing someone you care about experience Alzheimers or another type of dementia is painstakingly difficult. Knowing what to say to someone whos lost his or her memory can also be hard. However, how you approach conversations can have a significant impact on your loved one.

The most important tip for communication with someone living with Alzheimers is to meet them where they are, said Ruth Drew, director of Information and Support Services at the Alzheimers Association. In the early stage of the disease, a person is still able to have meaningful conversations, but may repeat stories, feel overwhelmed by excessive stimulation, or have difficulty finding the right word. Be patient and understand that their brain is not working in the way it once did.

As the disease progresses, communicating with that person may become even more challenging. However, if you recognize the changes and challenges that come with dementia, you will more easily be able to alter your conversations with that person to meet his or her needs.

This may require slowing down and making eye contact with the person as you speak, says Drew. Use short, simple sentences, ask one question at a time, and give the person time to process and respond before continuing the conversation. If you are kind, gentle and relaxed, everything will work better.

Read on for six helpful things to say to those with Alzheimers, and three topics and phrases experts recommend avoiding.

Stage : Very Mild Changes

You still might not notice anything amiss in your loved one’s behavior, but they may be picking up on small differences, things that even a doctor doesn’t catch. This could include forgetting words or misplacing objects.

At this stage, subtle symptoms of Alzheimer’s don’t interfere with their ability to work or live independently.

Keep in mind that these symptoms might not be Alzheimer’s at all, but simply normal changes from aging.

It’s Never Too Late To Work On Improving Brain Health

Sometimes, people feel that after a love one receives a diagnosis of dementia, it’s too late to do anything about it. Part of that response may be related to the normal grieving process after a diagnosis, but many caregivers have expressed that they really didn’t know that brain health strategies can truly make a difference in functioning, whether cognition is normal or already declining.

Instead, remember that while true dementia won’t go away and generally is progressive, there are still a lot of strategies that can be used to maintain and even improve brain health and functioning for a time in dementia. Physical exercise, mental activity, and meaningful activities can go a long way toward maintaining functioning and providing purpose in daily life.

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Stage : Moderately Severe Decline

During the fifth stage of Alzheimers, people begin to need help with many day-to-day activities. People in stage five of the disease may experience:

  • Difficulty dressing appropriately
  • Inability to recall simple details about themselves such as their own phone number
  • Significant confusion

On the other hand, people in stage five maintain functionality. They typically can still bathe and toilet independently. They also usually still know their family members and some detail about their personal histories, especially their childhood and youth.

Who Is Most Likely To Get Alzheimer’s

Do People with Dementia Know They Have It

The greatest known risk factor for Alzheimers and other dementias is increasing age, but these disorders are not a normal part of aging. While age increases risk, it is not a direct cause of Alzheimers. Most individuals with the disease are 65 and older. After age 65, the risk of Alzheimers doubles every five years.

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Ignoring The Symptoms Won’t Make Them Go Away

It’s not uncommon to spend valuable time in the early stages and symptoms of dementia hoping that the symptoms will just go away, or trying to convince yourself that it is just a phase or that you’re overreacting. This attempt to cope by denial of the problem may make things better for you in the short term of today, but it can delay the diagnosis of other conditions that look like dementia but are treatable, as well as delay diagnosis and treatment of true dementia.

Instead, remember that while it can be anxiety-provoking to schedule that appointment with the doctor, it can also be helpful to know what you’re facing. Even having your worries confirmed by getting a diagnosis of dementia can actually be a good thing, since there are many benefits to early detection, including medications that are often more effective in the early stages.

Supporting Your Loved One As They Learn Of Their Diagnosis

Without question, there are persons with Alzheimers or other forms of dementia who may not be impacted when receiving the news of their diagnosis because they are at a stage of the disease that leaves them too forgetful to retain it, or unable to understand it. But in those situations where the diagnosis is being presented to someone capable of understanding, how might we best present the information, and give support to our loved one?

  • Include your loved ones physician to explain the medical diagnosis and options available for medical management.
  • Tailor your explanation to your loved ones level of understanding.
  • Stay positive. Support your loved one by reminding them that you are going to do everything you can to support them through this illness.
  • Choose appropriate terminology. An alternative to the labels of Alzheimers disease or dementia might be memory problems.
  • Become an informed caregiver. Information is abundant through local and national organizations, online, and books.

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Dont Stop Visiting Just Because You Think They Wont Remember

Do you sometimes feel like it’s not worth it to spend time visiting your loved one? Think again. Even if they aren’t able to remember that you visited, research shows that the feelings you create remain far longer than the duration of your visit.

Those feelings can shape the rest of their day by influencing how they respond to others, how they feel, even how they eat. Be encouraged that your visit has more lasting power than you think. Remember that there are times when you will be enriched by your time together as well.

Stage : Mild Cognitive Impairment

Should you remind someone they have dementia?

Mild cognitive impairment often occurs before the more severe decline of dementia. Some 1218% of people aged 60 years or older have MCI, but not all will develop dementia. According to the National Institute on Aging, around 1020% of people over the age of 65 with MCI will develop dementia within any 1-year period.

A person with MCI may notice subtle changes in their thinking and ability to remember things. They may have a sense of brain fog and find it hard to recollect recent events. These issues are not severe enough to cause problems with day-to-day life or usual activities, but loved ones may start to notice changes.

Many people become more forgetful with age or take longer to think of a word or remember a name. However, significant challenges with these tasks could be a sign of MCI.

Symptoms of MCI include:

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Anosognosia And Denial Arent The Same Thing

When someone is in denial, theyre aware of a fact, but refuse to accept it.

But with anosognosia, someone with Alzheimers isnt in denial. Theyre not even aware that theyre cognitively impaired.

The disease has damaged their brain and makes it impossible for them to be aware of whats happening.

Are Older Adults Who Have Alzheimers Aware Of Their Condition

By Ted Holmgren 9 am on February 10, 2020

Awareness about Alzheimers disease is continuing to grow, yet people still have many questions about what its like for people who live with this condition. As a family caregiver, you may be grappling with questions such as whether to tell your senior loved one that he or she has Alzheimers. You may also sometimes wonder if your loved one plays up the symptoms to get what he or she wants. The truth is theres no easy answer to any of these questions, but learning more about how the disease affects a persons reasoning and awareness can help you begin to put together a plan to help your loved one through each stage.

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How Does A Doctor Test For Dementia

There is no single diagnostic test for Alzheimers disease and other causes of dementia. Dementias are diagnosed by evaluating and understanding a persons memory and thinking patterns. Doctors will consider a persons memory, grasp of language, mood states, problem-solving skills, ability to maintain focus and perform complex tasks. Evaluation may include in-office cognitive screening , physical examination, and review of labs. Labwork helps to determine whether there are vitamin deficiencies or hormonal changes at play. In some cases, evaluation may require neuropsychological testing, brain imaging , and genetic testing.

Ethical Codes And Telling The Diagnosis

Do People With Dementia Know They Have It

The psychiatrist should inform the patient of the nature of the condition, therapeutic procedures, including possible alternatives, and of the possible outcome. This information must be offered in a considerate way, and the patient must be given the opportunity to choose between appropriate and available methods.

But does this mean that psychiatrists have the duty to provide the information when there is no treatment? And how truthful should be the considerate way? Does it imply the whole truth? As much as the patient wants? As much as the patients physician believes is sufficient? The General Medical Council recommends that physicians, to establish and maintain trust in their relationships with patients, must give them the information they ask for or need about their condition, its treatment and prognosis in a way they can understand. In practice, patients with dementia rarely ask for the information, and many physicians seem to think that because there is no cure to offer, such knowledge may be only detrimental and, therefore, not needed in therapeutic relationships. But can the relationships be successful without telling the truth?

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Remember That He Really Can’t Control His Behavior

When your family member or friend has dementia, it’s tempting to believe that they’re really not that bad off. This can be a protective tendency so that you don’t have to directly face the changes that dementia is making in your loved one’s life.

Sometimes, caregivers would almost prefer to believe that a loved one is being stubborn, rather than the fact that they have dementia. The problem with that belief is that then, it’s very easy to feel that they’re choosing to dig their heels in and just being difficult You may feel like they have “selective memory problems” or that they’re just trying to provoke you or make your day difficult by not getting dressed to go to a doctor’s appointment, for example.

Instead, remind yourself that dementia can affect personality, behavior, decision-making, and judgment. They’re not just being stubborn or manipulative they also have a disease that can sometimes control his behavior and emotions. This perspective can make it feel a little less personal when the day is not going well.

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Memory Loss: Everything Became Fuzzier

Dementia symptoms result from damage to the brain caused by disease or injury. As brain cells die, it becomes difficult or impossible to store new memories or access old ones. Sometimes dementia comes on suddenly, after a stroke or head injury. Often it comes on more slowly as the result of conditions like Alzheimerâs disease or Parkinsonâs disease. Most causes of dementia cannot be reversed.

Mary Ann Becklenberg is in the early stages of Alzheimerâs disease, but her dementia symptoms have already had an enormous impact on her life. In 2006, she had to leave her position as a clinical social worker because she could no longer meet the responsibilities. âThe world became much less defined than it had been,â says Becklenberg. âEverything became fuzzier.â

The diagnosis didnât come until later. John Becklenberg says that he first knew that his wife had Alzheimerâs disease after she returned from a monthlong trip to California. âI was there with her for a week of her stay,â he says. âBut when she got back, she didnât remember that Iâd been there at all.â

âThat was so hard,â says Mary Ann Becklenberg, who now serves as an Alzheimerâs Association early stage adviser. âJohn listed all these things we did and places we went, and I didnât remember any of them. That was when we knew.â

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However, the memory loss associated with Alzheimers disease gets progressively worse over time, eventually affecting a persons ability to function or perform daily activities. Along with difficulty thinking or concentrating, Alzheimers may cause irritability, mood swings and bouts of anger, anxiety and fear.

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Reasons To Tell A Loved One They Have Alzheimers

Why would we tell a loved one they have Alzheimers?

  • Whatever the diagnosis, they have a right to know. It is the honest thing to do.
  • Your loved one may suspect something is wrong. Knowing may bring a sense of relief.
  • Knowing allows a person with Alzheimers and his or her family to start putting a plan in place for long-term care. This might include advance care planning documents, identifying family or professional caregivers, or a combination of both, and identifying community resources such as local memory care and adult day centers.

These are all possible reasons for telling or not telling one of their Alzheimers diagnosis. If you do opt to explain the diagnosis, also consider how to explain it, so that you give your loved one the support they need.

Things About Dementia People Wish They’d Known Earlier

Claudia Chaves, MD, is board-certified in cerebrovascular disease and neurology with a subspecialty certification in vascular neurology.

Perhaps you’ve heard the phrases, “What you don’t know can’t hurt you” or “Ignorance is bliss.” While that may be true some of the time, it’s often not accurate when coping with dementia. Having worked with thousands of people impacted by Alzheimer’s or another type of dementia, I can testify to the fact that there are definitely things that, as caregivers, they wish they would have known earlier about dementia. Here they are.

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Anosognosia = Someone Who Doesnt Understand Something Is Wrong

Anosognosia causes someone to not be aware of their health condition. Its common in some cognitive conditions, including Alzheimers.

So, if someone diagnosed with Alzheimers also has anosognosia, they wont know or believe that they have it.

Each person is unique, so the symptoms of anosognosia might vary. Symptoms may also change over time and might even change during a day.

For example, a person might sometimes understand whats going on and other times believe that theyre absolutely fine.

Because of this inconsistent behavior, some family and friends might not even know that theres something wrong even if they do notice that some behaviors seem unusual.

The Arts As Therapy For Advanced Alzheimer’s Patients

Do People with Dementia Know They Have It

In the remarkable book, “I’m Still Here: A New Philosophy of Alzheimer’s Care,” John Zeisel, Ph.D., describes the effect that art therapy has on people with dementia. Excursions to museums and art galleries with patients have shown Zeisel and his colleagues that folks with these diseases have some wonderful insights. Often, because of how dementia affects the brain, the person with dementia will see a painting differently than a person without the disease. But differently does not mean in a lesser manner. Zeisel illustrates times when a person with dementia can actually see more deeply into a piece of art and point out things that others miss.

People in more advanced stages of the disease still can benefit from being creative and productive as well. This could consist of making art, helping with safe kitchen projects, dancing and participating in life. Since Zeisel’s book is about treating these individuals by interacting with them in innovative ways, many of the people used as examples are not end-stage patients. However, Zeisel’s theory holds true throughout the person’s life. He believes that the person is “still there.”

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Too Many Medications Can Make People Feel And Act More Confused

While medications are, of course, prescribed to help people, too many drugs can hurt people instead, causing disorientation and memory loss. Oftentimes, a medication might be ordered for someone with the intention of treating something briefly and then be continued unintentionally for months or years without a need.

Instead, when you go to the doctor, be sure to bring in a list of all of the medications that your loved one is taking and ask if each one is still needed. Include all vitamins and supplements since some of them can affect how medications work, or they can interact with the chemicals in the medications. Side effects of certain medications are sometimes significant and can interfere with cognitive functioning. It’s worth asking for a thorough review of all of the medications to ensure that they’re truly helping, and not hurting, your loved one.

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