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Do People With Alzheimer’s Know They Have It?

Medically reviewed by Chiara Rocchi, M.D.
Written by Kacie Riggs
Posted on October 23, 2024

As a caregiver, you might wonder whether your loved one with Alzheimer’s disease is aware of their condition. This question doesn’t have a simple answer and can vary greatly from person to person. Let’s explore this topic in depth to help you better understand and support your loved one with Alzheimer’s.

Understanding Awareness in Alzheimer’s

Alzheimer’s affects everyone differently. Some may be fully aware of their diagnosis, especially in the early stages. Others may struggle to understand or accept their condition as it progresses into later stages. Generally, the stage of Alzheimer’s (mild, moderate, or severe) and a person’s cognitive function play a significant role in their awareness.

Recognition and Acceptance

In the early stages of Alzheimer’s, many people may still be relatively independent. Family members and loved ones might not notice symptoms right away, but those with Alzheimer’s may begin to notice the following:

  • Difficulty remembering recent events
  • Trouble finding the right words
  • Challenges with daily tasks

At this stage, some people may seek medical help on their own, leading to an early diagnosis. When diagnosed early, individuals often have a clearer understanding of their condition and can actively participate in decision-making and prepare for their future.

Denial

Denial is a common reaction to an Alzheimer’s diagnosis. It’s a natural coping mechanism that can help people deal with difficult news. Denial allows a person to maintain their sense of self and cope with the fear and uncertainty that comes with an Alzheimer’s diagnosis.

An individual may not even realize they are in denial about their condition. Signs of denial can include:

  • Refusing to discuss the diagnosis or ask for help
  • Continuing activities that may not be safe, like driving
  • Avoiding medical appointments or treatment

One myALZteam member shared, “Accepting a diagnosis is a whole other matter. Most people are in denial about their diagnosis — and very often, their families are in denial, too!”

Lack of Insight and Anosognosia

As Alzheimer’s progresses, many people lose awareness of their condition. The medical term for this is anosognosia. It means a person cannot recognize their own condition or how serious it is. According to the Cleveland Clinic, over 80 percent of individuals with Alzheimer’s experience anosognosia.

Anosognosia is different from denial. Denial is a way people cope with difficult news. In contrast, anosognosia happens due to physical changes in the brain. People with anosognosia may truly believe they don’t have Alzheimer’s, even when shown clear evidence. They might even forget their diagnosis due to memory loss caused by Alzheimer’s, leading them to avoid treatment.

Aging vs. Alzheimer’s

Some individuals with Alzheimer's may try to explain their memory problems as a normal part of aging. They might say things like, “Everyone forgets things as they get older” or “I’ve always been bad with names.”

While some forgetfulness and moderate cognitive decline is common as people age, it usually doesn’t affect day-to-day activities too much. In contrast, Alzheimer’s can change a person’s behavior, personality, and memory so much that it affects their independence and safety.

Accepting the Diagnosis

Some people with Alzheimer’s, especially those diagnosed in the early stages, can accept and understand their condition. This awareness can allow them to:

  • Learn more about Alzheimer’s and its progression
  • Take part in their care planning
  • Make important legal and financial decisions
  • Spend quality time with loved ones

Acceptance can lead to better outcomes and improve quality of life for both the person with Alzheimer’s and their caregivers.

Tips for Helping Someone Accept Their Alzheimer’s Diagnosis

If your loved one is having trouble accepting their Alzheimer's diagnosis, here are some strategies that may help:

Be Patient and Communicative

Acceptance takes time. Allow your loved one to process their diagnosis at their own pace. Reassure them that you are there to help. Create a safe space for your loved one to express their feelings about the diagnosis.

Provide Information

Offer clear, easy-to-understand information about Alzheimer’s to reduce fear and uncertainty. Once they are more informed about their condition, your loved one will be better equipped to make decisions, evaluate treatment options, and set their priorities.

Focus on Capabilities

Emphasize what your loved one can still do instead of what they can’t. This will help them feel accomplished and maintain their sense of independence and self-worth.

Seek Support

Encourage your loved one to join a support group for people with early-stage Alzheimer’s. Connecting with others in similar situations can be very helpful. As a caregiver, you can also join a caregiver support group to share your own insights and tips.

Plan for the Future

Involve your loved one in discussions about future care and financial and legal arrangements while they can still participate. This can give your loved one a sense of control and allow them to take part in the decision-making process.

Tips for Handling Someone Who Can’t Accept or Understand Their Diagnosis

If your loved one is in denial or has anosognosia, try these approaches:

Stay Calm

Arguing or trying to convince someone with anosognosia that they have Alzheimer’s can lead to frustration for both of you. Instead, remain calm and supportive when sharing your concerns.

Focus on Smaller Issues

Instead of discussing complications with Alzheimer’s as a whole, address specific problems as they arise. For example, start by helping your loved one remember to take their medication or call attention to small behavior changes.

Maintain Routines

Establishing and maintaining routines for daily tasks can provide a sense of structure. Scheduling daily activities in the same place around the same time every day can help reduce confusion. It may also be helpful to limit open-ended questions or situations that require decision-making, as this can cause unease.

Ensure Safety

Take necessary precautions to keep your loved one safe, even if they don’t believe they need help. This can include having lists of emergency contacts, medical alert systems, or other safety features around the house to prevent accidents. You might also want to consider long-term care or assisted living options for your loved one.

Seek Professional Help

A health care provider or therapist experienced in Alzheimer’s care can offer strategies tailored to your situation. They can also help your loved one come to terms with their diagnosis. Medical professionals can support caregivers too, helping them cope with the stress of caregiving.

Remember, awareness of Alzheimer’s can vary greatly from person to person and may change as the disease progresses into later stages. As a caregiver, understanding these differences can help you provide better support and care for your loved one with Alzheimer’s. Whether your loved one is aware of their condition or not, they are still the same person. Your patience, understanding, and support can make a world of difference in their journey with Alzheimer’s.

Talk With Others Who Understand

MyALZteam is the social network for people with Alzheimer’s and their loved ones. On myALZteam, more than 86,000 members come together to ask questions, give advice, and share their stories with others who understand life with Alzheimer’s.

Are you caring for a loved one with Alzheimer’s? What tips do you have to help with acceptance? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Posted on October 23, 2024
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Chiara Rocchi, M.D. completed medical school and neurology residency at Polytechnic Marche University in Italy. Learn more about her here.
Kacie Riggs is a current freelance writer and former content intern at MyHealthTeam. Learn more about her here.

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