Understanding Alzheimer’s as a Caregiver

When a loved one is diagnosed with Alzheimer’s disease, it’s normal to have questions. In addition to wondering how the disease will impact your loved one and how your relationship will change as you take on a caregiver role, it’s common to have questions about how to help your loved one understand and process their diagnosis and how best to share the diagnosis with family members and friends. At Banner Health, we understand the uncertainty that comes from an Alzheimer’s diagnosis for patients and caregivers alike. We’re with you every step of the way to help you navigate the journey together.

Helping Your Loved One Understand Their Alzheimer’s Diagnosis

When your loved one receives an Alzheimer’s diagnosis, you may ask yourself whether to tell them about their diagnosis. You may be torn on how to handle this situation. There are pros and cons to informing your loved one about their diagnosis:

Reasons for Not Informing Your Loved One

• Knowing their diagnosis may instill a feeling of hopelessness.
• Being aware of their diagnosis may cause distress.
• Not knowing their diagnosis can prevent your loved one from feeling like a burden on the family.
• You may feel there is no reason or difference from them knowing about their diagnosis.

Reasons for Informing Your Loved One

• Your loved one has a right to know about their diagnosis and health.
• They may suspect something is wrong and knowing their diagnosis may provide them with some relief.
• If your loved one learns about their diagnosis, they can start preparing for the future, including long-term care plans, preparing advance care planning documents, choosing family or professional caregivers and finding community support resources, such as local memory care and adult day care centers.

Depending on the stage at which your loved one learns of their Alzheimer’s diagnosis, they may or may not be affected. If a diagnosis is made in the later stages of the disease, they may already be too forgetful to remember the information or they may not be able to understand it. If your loved one is at a stage in the disease where they can process and understand the diagnosis, use these guidelines to help inform them of their diagnosis in a supportive way:

• Have your loved one’s provider explain your loved one’s diagnosis and options for treatment.
• Adapt your explanation of their diagnosis to your loved one’s level of understanding.
• Avoid labels and choose appropriate terminology, such as “memory problems,” instead of “Alzheimer’s disease.”
• Remain positive. You can support your loved one by reminding them you will be there to support them.
• Once may be enough If the person has difficulty understanding, accepting or remembering the diagnosis, it isn’t necessary to keep reminding them.

Sharing Your Loved One’s Alzheimer’s Diagnosis with Others

The impact of an Alzheimer’s diagnosis extends beyond the individual diagnosed. Friends and family members are also affected. As your loved one progresses through the disease, their relationships with others will change. It’s important to share the diagnosis with friends and family so they know what to expect and how to support and connect with your loved one as their abilities to remember details and communicate effectively change.

Here are some tips for sharing your loved one’s Alzheimer’s diagnosis with friends and family:

• Let those who care about your loved one know about the diagnosis and share resources and information with them about the disease. Even the youngest family members are affected, so it’s important to talk to the children in  your loved one’s life about what’s happening in an age-appropriate way.
• Give suggestions on how to start conversations with your loved one in a supportive way. For example, starting with a casual introduction like, “It’s your favorite granddaughter, Sarah!” or “It’s your old co-worker Jim” can help your loved one engaged more effectively.
• Remind friends and family what your loved one is still capable of and involve them in activities with your loved one.
• Encourage others to be patient and respond to your loved one’s feelings when they make a mistake or gently change the subject when they forget something rather than correcting them.
• Remind others not to take it personally if your loved one is unable to remember them or becomes angry or frustrated. Let them know that your loved one is acting out of confusion and not in response to them.
• Let friends and family know that their feelings of sadness and anger about the diagnosis are normal. Be honest about your own feelings and comfort one another.

Successful Communication After an Alzheimer’s Diagnosis

Communicating with a loved one who has recently been diagnosed with Alzheimer’s disease can be complicated and may even pose challenges for those in the early stage of the disease. However, communication is essential for the emotional and physical health of both the caregiver and patient.

How Does Alzheimer’s Affect Communication?

Signs of Alzheimer’s appear when healthy neurons and nerve cells in the brain stop communicating with each other. These cells eventually die, causing the brain to shrink which results in changes in personality, communication skills and control of one’s emotions. The effect of Alzheimer’s on the brain impacts:

• Memory and thinking
• Language and communication
• Personality
• Behavior
• Insight and judgement

In early-stage Alzheimer’s, “tip of the tongue” moments, or the inability to find the right word, become more common, as does repeating stories or statements due to short-term memory loss. By the middle stage, expressing oneself and interpreting new information becomes more difficult. As the disease progresses, the person’s understanding of cues for basic needs, such as hunger, thirst and fatigue becomes more difficult. In late-stage Alzheimer’s, verbal communication is much more limited as the person retreats more from the world.

Because of these continual changes, the way you communicated in the past will require change and adaptation as the disease progresses.

What Not to Say to Your Loved One with Alzheimer’s

Having conversations with your loved one can be challenging, as their ability to process and understand information becomes more difficult as the disease progresses. Alzheimer’s disease also causes a variety of emotions as your loved one not only copes with their diagnosis but loses the ability to regulate their emotions. It’s important to adapt your communication to their ability to understand and respond to it and to be sensitive to their feelings. Here are some common communication pitfalls to avoid to help improve communication:

1. You’re wrong.” While it’s difficult not to correct your loved one when they’re wrong, there is no benefit to arguing with them and risking upsetting them by telling them they’re wrong. Instead, distract them and change the subject to something more pleasant.
2. “Do you remember…?” Sometimes it’s hard not to reflect on the past and ask your loved one about specific events only for them to tell you they don’t remember. Being reminded that your loved one has lost memories may cause sadness or embarrassment. Instead, try to be sensitive about your loved one’s condition and be the one to recall the memory and use a prompt, “I remember when you and Mom did this…”
3. “They passed away.” It’s common for those with Alzheimer’s disease to forget that someone they were close to passed away. Your loved one may ask if deceased friends or family members are still around and wonder why they stopped calling or visiting. Repeatedly telling them that they passed away is fruitless. At best, they will soon forget what you told them and you will have to go through telling them again. At  worst, learning of the person’s passing may cause reactions from disbelief  to grief, both of which can cause your loved one distress. Instead, you can provide another reason as to why the person is no longer around or tell them they will see them soon. You can also gently change the subject.
4. “I told you...” One of the first signs of Alzheimer’s disease is memory loss, including forgetting recently shared information. You may notice that your loved one asks the same questions over and over again, causing you to have to repeat yourself often. In these situations, it’s understandable to want to refer back to what you previously told your loved one. However, if your loved one becomes aware they are asking the same questions and forgetting the answers, they may feel embarrassed by their lapse in memory or may feel as if they’ve done something wrong. Instead, calmly and politely repeat what you just told them without drawing attention to the repetition.
5. “Where do you want to go?” Open-ended questions that require your loved one to make a decision or remember something can cause them distress and should be avoided. Instead, ask questions that can be answered with a simple yes or no answer, such as, “Do you want to go to the store?” or “Do you want a sandwich?” Or offer choices to include their input, “Would you like eggs or pancakes?’
6. “Get your jacket on and go to the car; we need to go to the store to get groceries.” Statements that have several commands may confuse your loved one as the rate at which they process information declines. Instead, use simpler language and shorter sentences. Break up a task into single steps so it’s easier for them to digest. For example, start with, “Get your jacket on.” Once their jacket is on, "let’s head to the car.”
7. “Her dementia is getting worse.” While it’s important to know the things you shouldn’t say to your loved one, it’s also worth noting that you shouldn’t talk about them when they are in the room or are within earshot. Even if they don’t respond, assume they can understand everything you say. Instead, leave them room to discuss your loved one’s condition, making sure they can’t hear you if you talk about them.

Are you looking for other care strategies to help address situations with your loved one? Learn more about our Care T.I.P.S, specifically designed with your loved one’s needs in mind.

Fostering Positive Communication with Your Loved One

Behavior and communication in Alzheimer’s disease are intimately intertwined. As your loved one’s ability to say what they think, feel and need changes, behavior becomes a form of communication. Your loved one may use actions to convey thoughts when words are not readily available.

As your loved one’s ability to communicate verbally and to understand verbal communication changes, it is important to know that their ability to recognize and process nonverbal cues remains strong throughout the course of Alzheimer’s disease progression. Your posture, tone of voice, facial expression and eye contact convey meaning more effectively to a loved one with Alzheimer’s than what you verbalize to them. Make sure your non-verbal cues are communicating the message you intend; it will be understood much more easily than words. Use these tips to help you communicate with and support your loved one:

• Make eye contact and call your loved one by name.
• Be aware of your tone and volume.
• Pay attention to your facial expressions.
• Use other methods besides speaking, such as gentle touches.
• Hold your loved one’s hand while you talk.

As the disease progresses, your loved one may have communication or behavior changes which are difficult to manage when out in public. Some caregivers find it helpful to have a card on hand that explains their loved one’s diagnosis. A card with something as simple as “My loved one may say or do something unexpected due to Alzheimer’s disease. Thank you for understanding.” can prevent you from having to explain the situation to strangers, talk about your loved one in front of them or cause unintended embarrassment. Similarly, if your loved one has insight, they may consider using their own communication card to remedy these difficult situations.

The most effective approaches for communicating effectively with your loved one will evolve as Alzheimer’s disease progresses. However, if you can learn how to adapt your communication to your loved one’s changing needs, communication between you will be more effective, providing a better connection. The compassionate support staff at Banner Health is here for you. Make an appointment and consider classes to support better communication with your loved one today.