Diagnosis of Early Stage Dementia Needn't be the End of a Fulfilling Life

You've just found out that your father has been diagnosed with Alzheimer's disease and is in the early stages of dementia. All sorts of thoughts could occur to you.

You think that his life has ended, that he'll be confined to his home until he moves to an institution.

You picture him sitting in a chair all day, asleep most of the time, with few remaining abilities and fewer desires and needs.

You are not alone if these are your first thoughts, however, you'd be misguided. People with early stage dementia are not the old, tired, weak individuals society traditionally thinks them to be. Instead, they remain vital, creative and strong and can contribute to society in a great many ways, some for many years.

Unfortunately, when most people hear the words "Alzheimer's disease" they immediately focus upon the negative aspects of the illness and often forget about the person. They think about emerging problems (confusion, loss of fine motor skills, verbal difficulties) instead of the person's remaining abilities. This focus colors their perceptions, attitudes and behaviors.

So, often the greatest difficulty and challenge initially faced by those with early-stage dementia is maintaining their identity and dignity. In many instances the recently diagnosed individual is forced to give up employment and certain responsibilities within the family. Driving privileges may be reduced, if not totally suspended.

As one individual said most aptly, "Each day you give up something a little bit more."

Dealing with the known losses is difficult enough for those recently diagnosed without suffering additional losses as a result of society's ignorance about their condition.

People with early stage dementia are still able to express their wills, experience a range of emotions, initiate social contact, engage in constructive activity and display humor, creativity, and self-respect. In other words, people with dementia remain people, first and foremost. But society often fails to recognize this. We concentrate on managing the disease, while failing to nurture the individual.

Those recently diagnosed with dementia strive to continue a purposeful life, to maintain a sense of emotional, social, spiritual, physical and mental well-being, and not be defined by their illness.

However, time and again, this is exactly what happens. Activities offered to them are often designed to meet society's lowered expectations. But, what we should do is provide activities to engage and challenge the person. So, we must rethink what constitutes "activity."

In the early stages of dementia, everything a person does should be considered an activity. His or her life should be seen as the activity of being and doing. The care provider's job is to maintain meaning in the lives of the recently diagnosed. That doesn't necessarily mean incorporating new activities, but maintaining, not removing, one's remaining tasks, skills and abilities.

If we start removing things, the early-stage person may seem to be in a later stage than he or she actually is. Building on the strengths of the individual helps maintain as much of their natural ability as possible.

Foster past and current interests while making appropriate and necessary adaptations to ensure that the person with dementia is in a safe and secure environment. Safety is not solely limited to one's physical skills and abilities; a safe environment also protects and respects the social, spiritual, emotional and mental skills and abilities of the person.

For example: regular attendance at church or social functions because the person with dementia is having a difficult time in those settings. Ways of adapting to the dementia, but still attending, include: arriving late; leaving early; and sitting near an exit for the comfort of the person with dementia - to reduce the number of social contacts and anxiety. In conversation, the care provider can repeat the name of the person talking with the person with dementia as often as possible to enhance name recall.

Try to reframe the patient's "normal" activities, not eliminate them, so he or she can remain an active participant in life as long as possible.

Care providers have the responsibility to meet the needs of the whole person, help manage the illness and take care of themselves, as well. Remember, it's more important to know what person the disease has, than what disease the person has.

Jeffrey Toward, Ph.D., is assistant professor of nursing research at The University of Texas-Houston Health Science Center School of Nursing, Center on Aging. He is involved in a National Institute on Aging-funded research project, "Persons with Early Stage Dementia: Insight and Awareness."

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©2006 Texas Medical Center

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