Helping People with Progressive Memory Disorders »

Chapter 3: Visit to the Doctor

Any person who has a decline in their mental abilities should be examined by a physician. The examination should evaluate memory loss (not remembering), poor attention or confusion, loss of motivation or apathy; loss of skills in speaking, reading, writing, or doing arithmetic; or difficulty finding their way around (getting from one place to another). The physician should have training in ways to evaluate these disorders.

AWARENESS AND UNAWARENESS OF CHANGE

Some people are aware of changes in their abilities and others are not. Awareness of changes depends on the different areas of the brain where brain cells are dying. If there is any question of declining function, the person needs to be evaluated by a physician.

The person who is aware of changes in memory and thinking function often is highly motivated to see a physician to identify the health change and to follow a plan of treatment. Sometimes the aware person feels depressed over the health changes. Typically this type of depression is treatable and is temporary.

On the other hand, the person who is unaware of their own changed ability may refuse to be evaluated. Since they are unaware of change, it is almost impossible to convince them that there is any change. They may wonder why the family is making up such stories. Even faced with their own errors, such as counting change incorrectly or forgetting to turn off the water faucet, they may make a casual excuse or joke about it or become angry. These people are not in denial. In truth, they are unaware of their disability because of brain cell changes.

Sometimes they will see the physician as part of a routine physical exam or because of urging from their loved one. Some people will stay through the total clinical evaluation and others will only endure part of the evaluation before they insist on going home. Thus the clinical exam may have to be done in stages, over two or three visits.

THE DOCTORS EXAM

Preparing for the Visit

When possible, it helps to set up the appointment for the medical evaluation for the time of day a person is most cooperative, for example, mid-morning or early afternoon. A snack or something to do during the waiting time may help the restless, easily bored person. The appointment should be the only scheduled activity for that day to allow for a smooth, unhurried schedule and sufficient time to relax afterwards. When getting ready for the visit, allow plenty of time for bathing, dressing, travel, and adjusting to the physician's office.

Depending upon the amount of memory problem, the family caregiver may inform the person about the appointment the day before, one hour before, or a few minutes before going to the physician's office. While it is important to inform the person about the upcoming appointment, it is also important to maintain a relaxed, pleasant, cooperative situation. At the physician's office, sitting in the quiet area of the reception room away from the flow of people traffic, making trips to the restroom and water fountain, and talking about pleasant topics and memories should help time pass smoothly. The family caregiver should keep a relaxed, pleasant facial expression during the event.

When going to the physician's office, the family should bring notes about the changes in behavior, the situations where the memory problem occurred, and any questions of concern. In special cases, it may be more helpful to leave such notes at the physician's office a few days before the appointment.

A doctor who sees a person with signs of dementia will perform a careful medical evaluation. A full medical evaluation is necessary to determine if there is a treatable health condition. The doctor needs to learn exactly what is different about the person's current behavior and ability, the person's history of illnesses, and the current medicines.

The examination by the doctor includes a careful test of general physical condition, mental abilities, emotional health, and neurological condition.

Several laboratory tests are important in the complete evaluation of dementia. Pictures of the brain, either a CT (computer tomography) scan or an MRI (magnetic resonance imaging) scan, are almost always necessary.

The doctor needs to evaluate the levels of natural chemicals in the blood by examining a small amount of blood. Levels of thyroid hormones and vitamins, such as folate and vitamin B12, are checked. The blood will also be routinely tested for syphilis. Other tests may also be ordered. Sometimes the doctor may order an electroencephalogram (EEG) to observe the electrical activity of the brain. If the doctor suspects there is an infection, he or she may do a lumbar puncture to test the fluid that bathes the brain.

A complete medical evaluation is necessary to determine if there is a health condition that is treatable. On the next couple of pages, there are suggestions for the patient and family to follow after a physician's diagnosis of any untreatable, progressive dementia.

A CHECKLIST OF THINGS TO DO
After a diagnosis of a progressive memory disorder such as Alzheimer's disease, the person and family may find the following suggestions helpful.

- Learn about the disease and ways to manage it. A good book to read is The 36 Hour Day, by Nancy L. Mace and Peter V. Rabins (1981), The Johns Hopkins University Press.

- Contact a lawyer about legal matters, such as durable power of attorney, long term money planning, trust funds, life estate, trusts, a will, and a healthcare surrogate. You may also want to discuss decisions regarding a living will, a pre-hospital Do Not Resuscitate form, or Do Not Resuscitate orders. As soon as possible after the diagnosis of a progressive memory disorder, the family should begin the discussion of values, late stage care, and end-of-life care choices (in preparation for an unexpected accident, crisis, or sudden emergency).

- Respect the preferences and the right to choose of the person with the health condition.

- Decide who will handle family bills and other money matters.

- Plan for difficult decisions in advance with the person and family: who will provide care at home, who to contact in a health emergency or safety crisis, when to hire help, when to use a nursing home, etc.

- Keep on a simple, daily routine. Help the person stay active!

- Keep handy a list of emergency "HELP" numbers, special diets and activities, likes and dislikes, health problems, daily medicines, and the daily care routine.

- Supervise taking of medicines. Lock up harmful medicines or chemicals.

- Join a support group. Call the national Alzheimer's Association, Inc., 1-800-272-3900, 919 North Michigan Avenue, Chicago, IL 60611, for information and for caregiver or patient support groups.

- Learn about and use help available in your area, such as day health care programs, respite care, volunteers, religious organizations, meals on wheels, homemakers, and personal care services. Call Eldercare Locator Service, 1-800-677-1116, to locate services for older people and caregivers throughout the country.

- Discuss the situation with family and friends when you feel comfortable. Be specific about what help is needed and what jobs need to be done and when. Be gracious and accept help.

- To help the wanderer, get a medical alert identity bracelet or a wanderer's identity bracelet or necklace. Keep a recent photo and important information on file with the local law enforcement office. The Alzheimer's Association has a national registry for wanderers (more information at 1-800-272-3900).

- Do your best, but forgive your own mistakes. Smile. Laugh. Take a break. Caregivers must take care of their own physical, emotional, and spiritual needs regularly.

COMMUNITY HELPS

Available community resources can help both the caregiver and the person with dementia cope with the stress of living with the decline of mental ability. Find out about what is available in your community by calling the National Eldercare Locator Service, 1-800-6771116, or the Alzheimer's Association, 1-800-272-3900, for information and referrals to programs, such as those listed below, in your area:

- Information and Referral: information on help that is available in your community.

- Home health care: visiting nurse, rehabilitation, medical education, assistance with daily personal care provided in the home.

- Home delivered meals: prepared meals brought to the home for minimal cost or a donation.

- Homemaker: basic chores in the home.

- Personal aide: personal care such as bathing or dressing at home.

- Adult day health care: rehabilitation, social activities, supervision, and basic health monitoring in a structured day program.

- Companion or sitter: supervision with minimal assistance at home.

- Support group: self-help volunteer groups for families to share concerns, information, and tips on finding help.

- Respite care: care for a few hours or a few days a week to give family caregivers free time to rest or care for themselves.

- Foster care: private homes providing supervision, meals, and some help with personal care.

- Skilled nursing care: care requiring the skills of a licensed nurse that are provided at home or in a nursing home.

- Hospice: support services for the terminally ill (6 months or less to live) with special services available for families caring for a person with severe progressive memory loss.

A LIST OF NATIONAL RESOURCES IS PROVIDED AT THE END OF THIS GUIDEBOOK TO HELP FAMILIES FIND LOCAL PROGRAMS AND SERVICES THAT ASSIST OLDER PEOPLE AND PEOPLE WITH PROGRESSIVE MEMORY DISORDERS.

Community programs can educate the family about long-term changes associated with an illness. The public library may have a special file or book section with helpful publications. A reference librarian may help with a computer search of the latest materials, research findings, or medicines being used for people with progressive memory disorders. Clergy, social workers, counselors, nurses, or case managers are just some of the compassionate expert helpers available in the community to help families plan ahead. Families should learn caregiving skills, such as preparing foods that are easy to swallow or giving a bed bath. A list of community services, such as transportation or respite care, can help free up time for the caregiver while providing supervision and activities for the person with the memory disorder.

It helps to write down questions and concerns on a piece of paper before contacting a program about their service. Notes should include information on what each program does or does not provide, costs, free services, special conditions, and the good or unpleasant qualities of the person and program contacted. These notes should be kept together. They may be of immediate help or of help later. It is always a good idea to check out new information with other, trustworthy people. Checking with others helps a family find competent, caring people and programs.

CHAPTER SUMMARY

When a person has a change in memory or ability to perform in the usual way, a medical evaluation is important. The doctor will do a complete examination to find treatable health problems. If the doctor finds that the person seems to have an untreatable, progressive memory disorder, planning for long-term care is important. There are many helpful programs and resources available in communities throughout the United States. The National Eldercare Locator Service, 1-800-677-1116, and the national Alzheimer's Association, Inc., 1-800-272-3900, offer information about community resources on a national and local level.

The Next Chapter

When a medical evaluation uncovers a health condition that does not have a specific treatment, it is important to learn about the condition and ways to function well. The following chapters discuss some of those conditions and suggest ways to help.

The next chapter discusses the memory system. It touches on aging-related changes in memory and how stress influences memory ability.

Go back to the index.

Material taken from

"Helping People with Progressive Memory Disorders: A Guide For You And Your Family, 2nd ed." (University of Florida Health Science Center). Used with permission from the authors: K. M. Heilman, MD, L. Doty, PhD, J. T. Stewart, MD, D Bowers, PhD, & L. Gonzalez-Rothi, PhD. (1999).

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College of Public Health and Health Professions, University of Florida