Alzheimer's disease and other dementia-causing diseases can leave us feeling helpless and frustrated as we witness the decline of a relative or friend. But we are increasingly learning about the many ways that families and individuals with the disease can assume a more proactive approach to the disease through communication, planning, and participation in research studies. Even after death, one can offer important information to families and others through brain autopsy.

Research in Alzheimer's disease is growing by leaps and bounds. We are not, however, at a point that offers disease modification. Brain donations contribute to the body of understanding of the disease and possible weapons to combat it.

Brain donations from older persons who do not suffer from dementia are also critical, for comparison with brains afflicted with Alzheimer's disease. As surprising as it may seem, we still do not know enough about what changes are found in the brains of healthy persons as they age. Without this information, scientists cannot determine precisely which changes in the patient's brain are related to disease and which are related to aging.

Brain autopsies are essential for research. While a thorough dementia evaluation has an accuracy rate of 92 percent, autopsy can also provide useful information in diagnostic confirmation. There is a particular need for autopsy tissue from well-studied patients with a variety of neurologic illnesses. Comparison of a person's symptoms with changes found in the brain tissue can lead researchers to a better understanding of memory loss and other problems experienced by those who struggle with these brain diseases.

In addition, by confirming definitive diagnoses, autopsies provide valuable public health information on disease incidence to Congress and to others who make decisions regarding funding for health care services and research. Incidence numbers have historically been underreported, and continue to be.

Another reason for a family to choose brain autopsy is a concern about genetics. In the event that more than one family member has similar symptoms, familial autopsy results may provide vital information to the family and physicians in expediting diagnosis and treatment.

Not to be ignored is the simple incentive of benevolence. Brain donation often helps family members feel that they have provided a gift of hope to future generations, thereby contributing to a sense of meaning and legacy.

Making the decision

Because the decision for brain autopsy has important emotional and practical implications, it's a decision that individuals and their families should make only after thoughtful consideration.

And although individuals with Alzheimer's disease may live for many years, families should think about autopsy early in the course of the illness. It is important to make the necessary arrangements well in advance. In addition, family members need time to discuss the issue and explore any possible disagreements before the death of a loved one. The person's doctor, nursing home personnel (if appropriate), and the funeral home director should also be informed of the family's decision.

The planning process takes a bit of work ahead of time, but it ensures that upon the death of your loved one all of the relevant professionals can be in direct contact with each other and carry out your wishes efficiently.

Facts about the autopsy procedure

In brain autopsy, a pathologist, often assisted by a technician, examines the brain tissue under a microscope, looking for the characteristic hallmarks of Alzheimer's disease, such as neuritic plaques and neurofibrillary tangles. Each brain is also routinely evaluated for evidence of stroke, Parkinson's disease, vascular changes, frontal temporal dementia, Creutzfeldt‐Jakob disease, brain tumors, infections, and many other disorders that can cause dementia or that may coexist with Alzheimer's disease.

The funeral will not be delayed due to the autopsy. A brain autopsy requires only a few hours and will be conducted as soon as possible. The body is not disfigured, so an open-casket funeral is still an option.

Most religions support brain autopsy and tissue donation. In fact, none of the major religions absolutely prohibits a brain autopsy. The decisions of each individual and the family will be respected.

Receiving the final report

Approximately three months to a year after the autopsy is performed, the family will receive a final report on the official diagnosis and what was learned through the autopsy. You will receive a formal written report that you can share with your own physician or with other family members. In research programs, the pathology results from the autopsy are correlated with medical records and clinical testing data during the person's illness for broader understanding of the medical picture.

How to arrange for brain autopsy

Find and contact a pathology program.  Many pathologists and medical centers, including individual pathologists, hospitals, and medical schools, can confirm a diagnosis with autopsy.  However, it is recommended that you contact a medical center or brain bank with experience in neurological disorders.

In Greater Kansas City, the Alzheimer's Association maintains a list of places that accept brain donation.
The National Institute of Neurological Disorders and Strokes maintains a listing of brain banks on the research section of its Web site, www.ninds.nih.gov. Most of these programs are research-based, and the person needs to be enrolled in the program ahead of time to qualify.

It is important to ask about costs. Private pathologists, medical centers, and funeral homes may charge for harvesting, transporting, and examining the tissue. If autopsy is done within a research study, typically the family will not be charged.

Enroll in the program. Each program has certain criteria for eligibility. Most require that you register with the program ahead of time to ensure that the patient meets their criteria. The program will have forms for you to sign and specific advice on how to make arrangements with a funeral home. Many programs have helpful literature and are happy to guide you through this process.

Select a funeral home. Coordination with the funeral home is important for a timely response when death occurs. It can also ease the burden on family members if arrangements are made ahead of time and your plans are clearly communicated.

Inform the patient's caregivers. Once the forms are signed and arrangements are made, make sure your physician, the nursing home (if the patient is not at home), and the funeral home understand your wishes. Give them copies of the instructions and legal forms.

Alzheimer's Association
Heart of America Chapter
3846 W. 75th St., Prairie Village, KS 66208
www.alz-heartofamerica.org
913-831-3888 • 24-hour line: 800-272-3900

Thanks to Michelle Niedens of the Alzheimer's Association for help with this article.

Sources
www.ftd-picks.org/frontotemporal-dementias/autopsy
www.med.emory.edu/ADRC/BrainDonation.htm
www.americanautopsy.com/facts.html

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