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Communicating with someone with Alzheimer's Disease and Planning for the Future

Updated: Mar 4, 2020

Language changes in Alzheimer's

People with Alzheimer's Disease, even in the mild stages, may have language disturbances that are not noticed by many people, including the spouse. The most common form of language disturbance in Alzheimer's Disease is called logopenic aphasia, and results in inability for the person to process sentences that are longer than a few words. This means that they may not understand or hear when a person is talking to them, even if they seem to understand by nodding their head or saying "Yes, I understand." They may also have trouble coming up with names, names of people or of objects, or seem to use less specific language in their speech, saying things like "that thing" instead of the actual object. Usually a person with these types of language difficulties is unaware of their problem, or has trouble expressing it. In other people, they may complain of difficulty naming people or things.

Other forms of Communication (Gestures, Facial Expressions, Tone of Voice, and Emotions)

Memory specialists or Cognitive Neurologists can test for this type of aphasia with a quick examination, and can advise the family on how best to communicate with the person. If it is the typical logopenic aphasia associated with Alzheimer's, it is best to communicate with the person using short phrases, such as "Please check mail," instead of, "Honey, can you please go down to the driveway and check the mail." As the disease progresses, it may be difficult for the person to understand more than 1-2 words at a time. Also, the brain areas associated with facial expressions, gestures (such as a kiss, hug, or handshake), and tone of voice may be less affected, so I usually recommend practicing enhancing your facial expressions, gestures, and tone of voice with a person early on in the disease to help communicate and prepare for later stages.

Emotions will always be remembered

No matter how much a person's memory loss progresses, they will always remember how someone made them feel. The emotional part of the brain is one of the deepest and most preserved in people with Alzheimer's. So focusing on positive, happy experiences, and positive facial expressions, tones of voice, and gestures is extremely important for preserving the quality of life for a person with Alzheimer's Disease.

From the New Yorker article below,

“[Some experts] believe that to think of the disease as a terrible harm is to think slightingly of people who are living with it. They argue that, with proper care, a person can live as good a life with dementia as without—in some ways and in some cases even better. Sometimes relationships between a person with dementia and their family grow more emotional and intimate as talking falls away. [Experts] believe not only that a happy life is possible with dementia but that such lives could be instructive to the rest of us. “People who have dementia, for whom the life of the emotions is often intense, and without the ordinary forms of inhibition,” he wrote, are “inviting us to return to aspects of our being that are much older in evolutionary terms: more in tune with the body and its functions, closer to the life of instinct.”

"Testing" or Reorienting people with Alzheimer's

I often hear family or friends ask a person with Alzheimer's, "Do you remember where we are?" when they are at the doctor's office, or when they are with family, "Do you remember who that is?" and point to a distant relative. We may think we are helping a person with Alzheimer's through these reminders, but a person with typical Alzheimer's has memory loss that does not improve with reminders. (For the types of Alzheimer's and other Dementias, see here.) So, a reminder will not help the person learn the information, it will only remind them, especially if it is phrased as. "Do you remember?" that they have a memory problem.

For more information on the benefits and ethics of this approach, see this article from the New Yorker, “The Comforting Fictions of Dementia Care”

Here is an excerpt:

“To lie is to violate the respect that one person owes another; but lying to a person with dementia can protect them from awful truths that they have no power to alter. If a woman asks for her husband, having forgotten that he is dead, should you tell her the truth and cause her terrible grief, knowing that this fresh bereavement will likely repeat itself, over and over, day after day? Or should you just tell her that he is at the office? And is direct lying different from various forms of passive lying—encouraging delusions, or allowing existing delusions to persist? What is more important—dignity or happiness?“

“First among [an expert’s] rules: Never ask questions. Questions, she thought, put you on the spot: they could cause a person with dementia to panic by demanding an answer that they might not be able to give. Instead, she learned to start a conversation by rambling on about something boring—usually the weather—in order to ease her way into the person’s attention in an unthreatening manner. Once they started talking, she would use words they had used, mirror their gestures, and declare herself fascinated by what they said, to create a sense that at last they were with someone who really understood them.

Another of her rules was: Never contradict anything the person said, no matter how distant from reality, in order to spare them a distressing confrontation with their own decline. But it wasn’t enough simply to avoid correcting; to keep the person truly happy, she thought, you had to identify the roles in which they were happiest and which fit common situations...

[The expert‘s method] had much in common with improv comedy, following the same rules: Never say no to the reality you’re given; say “Yes, and,” building on whatever the other person said; don’t ask questions.”

This takes unbelievable energy and patience! Get help from your Support System and Take Breaks

These communication tips may be very difficult for one person to keep in mind all the time. They require a lot of empathy, patience, energy, and effort. In fact, I believe it is impossible for a family member or other loved one to do this all day long everyday.

It can be very difficult to communicate with someone with Alzheimer's Disease. The most difficult part of the disease may be that the person does not seem to think that they have a memory problem or need help, when it is clear to everyone around them, including family, friends, and physicians.

It is medically necessary for the primary caregiver to get respite from their loved one for several days or weeks, as early in the process as possible. In fact, it is more likely that the primary caregiver will die before the person with Dementia, often due to neglect of their own medical conditions or stress. Another family member can visit or stay with them, and some long-term care insurance policies cover respite care stay for people with Dementia for short periods of time.

Lack of Insight: Anosagnosia

The reason most people with Alzheimer's Disease continue to deny their condition, memory loss, or need for help is that they have brain changes in the parietal lobe, which controls monitoring of one's own body. People with Alzheimer's Disease and other conditions affecting the parietal lobe then have some lack of awareness of their symptoms or need for help. The medical term for this is anosagnosia and it is difficult to treat.

Detecting Signs of Distress

So how do we talk to a person with Alzheimer's Disease about their symptoms? We can listen very carefully to what they say, how they are feeling, how they are sleeping, and how they are acting. Often a person with Alzheimer's Disease does not say directly that they are frustrated that they can't remember, but rather, they withdraw from social situations, activities, or conversations. They also become easily irritable or want to go home when a lot is happening that their brain can't process.

Planning for the Future

How do we talk to a person with Alzheimer's Disease about what is going to happen in the future? This is very difficult. I always recommend having several conversations about what a person would want if they needed nursing help for several hours per day or 24 hours per day. Download and print these Advance Directives and discuss them with your doctor. If a person lives 10 to 20 years with Alzheimer's Disease, this needing help is likely to happen, and it is best to have a financial plan for this ahead of time, and not wait for a crisis like a fall or hospitalization to decide what to do. However, talking to a person with Alzheimer's about needing help may be almost impossible because they may continue to deny that they need help, even until the very end, or have language issues making it difficult to understand or express what they want.

I always recommend talking about planning for the future in general terms. Such as, "If you were to need extra physical help that I couldn't provide, what would you want?" I think it is usually never helpful to confront a person with the fact that they have "a memory problem", "Dementia", or "Alzheimer's". They usually react with denial and defensiveness. However, I have seen this discussion to be very difficult no matter how the topic is brought up. I believe that every person age 65 and older, even if they are healthy, should have a plan for if they need extra supervision or nursing help. This is because people are now living to their 90's and 100's and it is likely this will be needed.

Sometimes a loved one or family member cannot discuss this with a person no matter how many times they have tried. In many cases, it is up to the loved one to decide what to do, get a caregiver for the home, or place them in an assisted living facility or memory care facility. This can be a huge emotional burden for one person, associated with a lot of guilt, especially if other family members or friends are unaware or don't believe the diagnosis. It is always best for a loved one to have a support system of family and friends when making this decision. If possible, this should be a shared decision between many people who love the person, as well as a shared responsibility to make sure they get the care they deserve once it happens.

In the end, family members or other concerned loved ones often consult with an Elder Law Attorney to initiate the conversation and prepare for the future. Sometimes it is best for the loved one to first make the appointment, and then next invite the patient to the meeting.

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