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Many with Alzheimer's Do Just Fine

Diagnosed with Alzheimer’s when he was 61, William Utermohlen continued painting, a passion he developed as a young child. Most of his later artwork concentrated on self portraits, which had precise, accurate depictions of his physical appearance, often set to a stylized background.
Over the course of his disease, the paintings became increasingly abstract. Arms and legs were hard to recognize, and the sense of proportion that marked his early work was lost.

To art critics in France, these later portraits revealed a state of mind that seemed sad, angry and resigned. But to a group of Alzheimer’s specialists who compared them to Utermohlen’s earlier work, such themes were present throughout his career, suggesting little emotional change in the artist, despite a clear decline in his ability to paint.

"When you are painting it is always about how you feel." Utermohlen told the researchers.

The examination of Utermohlen’s artwork, published in the journal The Lancet, offers a rare glimpse into the psychological health of those living with Alzheimer’s. Depression and agitation are commonly seen in patients, who must struggle with forgetting once-familiar faces and the ability to do even simple tasks.

Strong Willed
But as doctors are finding from Utermohlen’s paintings and various surveys, Alzheimer’s is not automatically associated with the type of distress many seem to expect. Despite the importance people place on memory, the disease may cause an unpleasant disruption at first, which fades in recognition as memories do. Those with Alzheimer’s spend their remaining life possibly no worse or better off emotionally than before.

"They adapt surprisingly well." says Dr. Peter Rabins, a leading Alzheimer’s expert at Johns Hopkins University.

The inability to answer complex questions makes it hard to tell if changing moods are normal or the result of Alzheimer’s, but Rabins says that simple questionnaires are good at judging how a patient truly feels. Like plenty of others who face a debilitating disorder, those with Alzheimer’s often express a resilient attitude about their fate.

"When bad events happen, most do their best to get by." says Rabins.

Alzheimer’s, however, is unique in that it damages areas of the brain responsible for awareness and complex thoughts, raising difficult questions on how to best handle each individual patient. The reason why some might seem content is that they no longer comprehend what is going on around them. Do you confront your loved one with the truth, or leave them kindly in the dark?

Dr. Jason Karlawish, a dementia expert at the University of Pennsylvania, argues for honesty.

"Don’t hide the diagnosis." he says. "Patients often want to know."

Part of the reason that people with other diseases do so well, he adds, is that they are aware of what they are up against and are compelled to make tough choices.

"Ignorance is not bliss." Karlawish says

Not Thinking the Worse
Even so, many Alzheimer’s patients say that their lives are going fairly well. In a recent study Karlawish helped conduct, nearly 200 people with mild-to-severe Alzheimer’s were asked to rate their quality of life. Out of the 181 patients who could confidently answer the survey, more than two-thirds viewed their lives as "good" or "very good." according to results published in the American Journal of Geriatric Psychiatry.

Such optimistic assessments are not always shared by families and caregivers. In a separate study published in the same journal, researchers from Brown University found that people in various stages of Alzheimer’s all rated their quality of life as relatively decent. Yet caregivers had a significantly poorer outlook on how their loved one was doing, especially if they looked after a patient who had severe memory loss.

"Many think that losing your memory is one of the worst things that can happen." says Rabins. But as long as patients are being cared for in the appropriate way, he says that the disease isn’t "necessarily bad" on the way they view their life.

Part of the right care is paying attention to real changes in mood. As many as 25 to 35 percent of Alzheimer’s patients suffer from depression, which can be helped with treatment and group therapy.

Karlawish says that families should be open about the disease and discuss how a patient is feeling.

"If someone says they are fearful of losing their memories, go there." he says.

Rabins recommends plenty of stimulation and quality family time. Though it may be frustrating to watch a loved one suffer from Alzheimer’s, everyone can benefit from spending more time together.

"Even if you can’t remember your grandchild’s name, you can enjoy being around children." he says.

The feeling is often mutual, Rabins adds. "You can have Alzheimer’s and still be a wonderful grandparent."

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