Tag: Alzheimer’s disease

Choosing Words Wisely

I am not a fan of political correctness. We have come far astray of the general knowledge that “sticks and stones….” Moreover, the limitations prompted by overzealous word-watchers can sometimes affect the ability to communicate freely and clearly.

However, I also recognize that while words may not physically injure us, they can hurt and often can rob people of dignity.

For example, I often ask students in a class I teach what is wrong with the phrase “the Alzheimer’s sufferer” or “the wheelchair-bound man.”

Know the answer?

Both phrases define people by a characteristic or condition. It’s far better in these cases to write or say “the man with Alzheimer’s disease” or “the woman who uses a wheelchair.”

In doing so we are not defining the person by a single characteristic—and are affording them the dignity they deserve.

Recently, I wrote an article asking people to support a variety of causes within Diakon. One of those causes is memory care. I used the phrase Alzheimer’s disease once or twice in that brief section, but never used the word dementia.

The person for whom I was writing asked that I downplay the Alzheimer’s phrase and use dementia more prominently. Why? Because Alzheimer’s, she indicated, was just one type of dementia and we wanted to cover the topic more broadly.

She was right about one thing. And “wrong,” I believe, about another.

She was right that Alzheimer’s disease is a form of dementia. It is the most common type of the memory-related illnesses grouped under the medical diagnosis of dementia, a term that also encompasses vascular dementia, Creutzfeldt-Jakob disease and other conditions.

She was wrong, I would argue (and I did), that the use of the word dementia was better.

I agreed that we wanted the article to encompass memory concerns beyond Alzheimer’s disease, but would not agree to use dementia. In fact, I have edited out that word every time someone uses it in their writing.

I prefer the phrase “memory-related illnesses.”

For some reason, I find the word dementia pejorative, a term that negatively characterizes a person, that rings harsher than it should.

I discovered, in trying to buttress my point, that I am not alone.

There are a number of articles online, including one on a webpage that is part of the National Institutes of Health—that propose abandoning, at least in popular writing, the term dementia—which originated from the Latin word “demens,” originally describing “madness”—in favor of various other words or phrases such as cognitive impairment.

Or, I would add to that list, at least for public-focused writing, memory-related illnesses.

There is no question these diseases are harsh. I just think the way we refer to them need not seem that way as well.

What are your thoughts?

By William Swanger
Senior Vice President
Corporate Communications & Public Relations

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Facing the holidays as an Alzheimer’s caregiver: Tips from those who have done it

The holidays can be a very emotional time for everyone, including families and friends who have loved ones dealing with Alzheimer’s disease and other forms of cognitive illnesses.

For those affected by cognitive degeneration disease, the biggest thing to remember is to be accepting of what people feel.

Holidays can be filled with a wide range of emotions ranging from pure joy to utter sadness. Regardless of the emotion, accept it and try not to judge your feelings or the feelings of others during this time. Holidays may feel and look different because traditions are not able to be followed exactly as before, but that does not mean you cannot have a meaningful experience.

Here are a few tips that can help make your holidays happier:

  • Take a different perspective on the visit

One of the reasons visits can be a challenge is disease progression. Over the course of the disease, attention span changes, interests may vary and memories fade in and out. You may not be able to talk to the person the way you used to. Maybe you used to sit and have tea with your loved one. Now she can no longer sit for long periods of time or maybe she no longer likes tea. This changes our ability to connect, so we have to rethink our approach to the visit.

 

  • Step outside your world

Forget what you know to be true and enter into their world. Often loved ones’ perceptions may be different from yours. For instance, if they can’t remember something in the past, do not argue with them. Arguing or pleading with them to remember something can increase frustration for everyone. Contradicting their reality does not work when you are visiting with someone whose brain has a difficult time making sense of the world around them.

 

  • Be prepared to participate in an activity

Often, an activity such as listening to music or looking through a photo album may help make the visit enjoyable because it allows you to make a connection. If your loved one is in a care facility, reach out to the staff to inquire about fitting activities.

 

For example, a direct caregiver may be able to tell you that your loved one has a newfound love of sitting next to the garden and watching birds, something he or she may have never done before. Or perhaps a loved one has developed a new enjoyment of vanilla milkshakes or hamburgers. Use whatever current interests are to guide the visit.

 

Times can also play a factor in visits. Again, use your facility staff as a resource; they may be able to tell you that your loved one gets tired in the afternoon and when she gets tired, she gets tearful.  Similarly, if you are bringing home a loved one for the holidays, the staff may share with you the best time to take her out and when to bring her back to reintegrate her into her surroundings.

 

Remember, as the disease progresses, likes, interests and best times to visit may change. What may work on one visit may not work on another. Try to stay flexible with your goals and expectations.

 

  • Don’t ask loved ones to do something they can’t do

It is often hard for their brain to recall memories. Do not ask them ‘who am I?’ or encourage them to ‘think harder’ when they cannot recall a person or memory. As much as you desperately want to maintain a connection, asking them to do something beyond their cognitive function may cause stress and aggravation.

 

  • Embrace the present

Cognitive impairments are heartbreaking diseases. It’s difficult to watch someone you love deteriorate and change into a totally different person in front of your eyes.

 

This transition induces grief and prompts questions such as “how do I still love this person if he or she is not the person I knew?” Although it may seem as if your loved one is slipping away, remember that a person with dementia wants to remember you, but his or her brain is just not physically capable of doing that.

 

Although you desperately want to maintain your previous connection, the greatest gift you can give yourself or your loved one is a meaningful visit reflective of the present.

 

Know that, even with these tips, a visit can be difficult. Sometimes, you may not know what to say or do.

 

Regardless, acknowledge that you are doing the best you can. If you “go with the flow,” more often than not you will have a successful visit.

—Michelle Gaugler
Personal Care Administrator
Luther Crest, Allentown, Pennsylvania

With 24 years of experience in long-term care, Gaugler understands the struggles facing residents with memory-related illnesses and their families. Dedicated to enhancing life, she has contributed to memory support for patients in all levels of care.

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Living with Alzheimer’s … some bonds just can’t be broken

Alzheimer’s disease is a brain disorder that progressively harms and ultimately destroys brain cells, leading to memory loss and changes in thinking and other brain functions.

People are at the greatest risk of developing Alzheimer’s disease if they are more than 85 years of age; they may have a reduced risk of developing memory loss-related diseases if they maintain a healthy lifestyle throughout their lives, according to the National Alzheimer’s Association.

Because people experience Alzheimer’s disease differently with varying symptoms, it is important that a doctor provide the diagnosis. Symptoms generally include the loss of problem-solving ability, impaired judgment, and loss of short-term memory.

Alzheimer’s disease occurs gradually. In fact, after a diagnosis is made, family members often say they believe they should have “seen it coming.”

As families learn to deal with a loved one’s Alzheimer’s diagnosis, they must become aware of the reality they face—the disease gets progressively worse and families should make plans to handle that decline.