The faces of Alzheimer’s Part I: Face of the patient

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This four-part series examining Alzheimer’s disease, which will run each Thursday in November coinciding with National Family Caregiver Month, is meant to provide general information about the disease and sources where help for treating patients and assisting caregivers can be found. It will provide a general overview of Alzheimer’s-related issues, giving people a starting point for help once their families are affected by the disease. Soon, Alzheimer’s disease (AD) will become a tremendous health crisis for the United States.

My Alzheimer’s education began in 2009 when my aunt was diagnosed. When I had another aunt (not with Alzheimer’s) move into the “care suites” at Evergreen Knoll Assisted Living, my visits to her brought me in contact with AD patients. Over time, after learning a little more about the disease, I became friends with many of those AD patients. In 2011 my aunt with AD died, and in the years since many people I’d grown fond of in “care suites” have died as well. I found myself wanting to learn more about the disease and how I could help.

In 2013, I attended an Alzheimer’s support group briefly when my Dad showed symptoms, then started again in 2015. After a few group sessions I realized more information about victims and caregivers of victims needed to reach people as yet untouched by AD. I am grateful the Pine Journal is happy to provide the public some basic knowledge about Alzheimer’s.   

Part I will explore how Alzheimer’s affects the patient. Part II will examine the effect of AD on family caregivers and friends. Part III delves into the importance of health providers and professional caregivers and how AD affects the public. Part IV, on Thanksgiving Day, will conclude the series by focusing on Alzheimer’s research and the future. Information provided is based on personal experience, expert and professional opinion, and educational publications.

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Part I: Face of the patient

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The Alzheimer’s Association defines Alzheimer’s as a disease of the brain that causes problems with memory, thinking and behavior. It is not a normal part of aging. Alzheimer’s gets worse over time. Although symptoms can vary widely, the first problem many people notice is forgetfulness severe enough to affect their ability to function at home or at work, or to enjoy lifelong hobbies. The disease may cause a person to become confused, get lost in familiar places, misplace things or have trouble with language.

Dementia is a general term for loss of memory and other intellectual abilities serious enough to interfere with daily life. Under the dementia umbrella are a number of conditions that can cause memory loss and alter judgment and reasoning. Of the 11 types of dementia, Alzheimer’s is the most common, representing 60 to 80 percent of all cases. Other types of dementia include Vascular dementia and Lewy body dementia. Lewy bodies are often found in Parkinson’s disease (which afflicts Michael J. Fox and Muhammed Ali) and Alzheimer’s patients, making this form of dementia harder to diagnose.

A person suspected of having dementia

Usually, symptoms appear gradually. Sometimes people afflicted are first to notice something wrong. They have difficulty remembering things. Their ability to understand, reason or use good judgment may be impaired. They may become irritable or depressed. Remember, not all symptoms occur in every patient. However, even in this mild to moderate stage of dementia, they are able to function and do most things they have always done.

The 10 warning signs of Alzheimer’s:

1. Memory loss that disrupts daily life

2. Challenges in planning or solving problems

3. Difficulty completing familiar tasks

4. Confusion with time or place

5. Trouble understanding visual images and spatial relationships

6. New problems with words in speaking or writing

7. Misplacing things and losing the ability to retrace steps

8. Decreased or poor judgment

9. Withdrawal from work or social activities

10. Changes in mood and personality

Source: Alzheimer’s Association

As Alzheimer’s progresses, symptoms intensify. One of the most worrisome symptoms is wandering. Six of 10 people with AD will wander and become lost. If not found within 24 hours, up to half risk serious injury or death. Subscribing to a 24-hour emergency response system, such as Lifeline, can be critical. Other intensified symptoms can include hallucinations and developing a suspicious and accusatory nature. Caregivers must develop a “thick-skin” and not take accusations of thievery or other actions personally.  

Once dementia is suspected, the person needs to be seen by their physician. The primary care physicians usually become the lead medical professionals. They refer patients to specialists such as neurologists. Family caregivers, particularly those in support groups, recommend that a neurologist/neuropsychologist evaluate the patient. Testing of various types, including blood workups and cognitive mental testing, helps eliminate some things and pinpoint others. It all aids in the treatment plan. To find specialized professionals, get questions answered, or obtain educational materials, contact the Alzheimer’s Association at 218-733-2560 or 1-800-272-3900, or find them online at www.alz.org.


When the diagnosis is Alzheimer’s Disease

Once someone is diagnosed with Alzheimer’s, they and their family face the task of learning to live with this illness. Include the patient in all decisions; don’t shut them out from remaining part of the family. When preparing the home for providing care, establishing a calm, organized living area is important. Yelling and arguing with the AD patient only increases their anxiety level. Family members should realize changes that occur are not the result of an unpleasant personality grown old; they are the result of damage to the brain and are usually beyond the control of the person with dementia.

Besides physicians and the Alzheimer’s Association, helpful professionals also include nurses, social workers, care consultants and therapists.

In addition to proper nutrition and rest, patients need a structured daily activity routine which includes an approved exercise program.

Personal trainer Robyn Raushel, manager of Park Avenue Fitness, discussed how Alzheimer’s patients benefit from exercise.

“We have several people with Alzheimer’s who are members. Once they learn what their exercise routine is, they really look forward to their workouts,” said Raushel. “Our members with Alzheimer’s have found that these exercises do them a world of good. And they really benefit from the socialization.”

Later, Donna (caregiver support group member) and her husband were exercising at Park Avenue. When asked about her husband’s workouts, Donna said, “We come here three times a week. He does his exercise routine religiously. Aside from Alzheimer’s, he is in good physical health, but it’s important for him to stay occupied.” As I watched, he seemed to be enjoying his workout.

“The 36-Hour Day,” a book by John Hopkins Press, is a family guide to caring for people with Alzheimer’s. That book, along with the Alzheimer’s Association publication, “Basics of Alzheimer’s disease,” will be the primary data sources for this series.

Once symptoms are evident, and a diagnosis made, the family and the patient must begin life with Alzheimer’s. Life will forever change for them. It can be a long journey at home, as we will discuss in Part II: Face of the family caregivers and friends. Mike Berglund writes the monthly column “The ‘RIGHT’ Slant” for the Pine Journal. He is writing this series on Alzheimer’s because it was important to him to get the information out to as many readers as possible, and to help others whose lives have been touched by Alzheimer’s Disease.