Tots Raise Money for Alzheimer's Disease Research

Especially on Martin Luther King Jr. weekend, one good deed deserved another. On January 12, about 50 preschoolers at the All My Heart Education Center (AMHEC), a Cleveland day care center, presented $1,000 to the University Alzheimer Center (UAC). "You gave to us and we are giving back to you. That's what Dr. King would have expected," said Dawn Benton, AMHEC director.

In 1998, Benton was delighted to qualify for a $500 community grant from UAC's Minority Satellite to help the African American community with funds for equipment or programs and to disseminate information about Alzheimer's disease. Benton bought a colorful plastic playhouse for her youngsters. To educate her community about Alzheimer's disease and research, she held a grandparents' day. She joined the UAC's African American Advisory Board. She still wanted to do more. "We decided to hold a minithon," said Benton. Just before Thanksgiving, her young charges held a neighborhood walk, hopped, ran, galloped, and had other relays. Area churches, businesses, and community members contributed generously. "Any time someone helps out, I feel a debt of gratitude, but this single gift has meant so much to all of us that I find it hard to adequately express our gratitude. The All My Heart Education Center is an inspiration to all," said Dr. Karl Herrup, UAC director.

UAC researchers are hoping to learn more about how Alzheimer's affects African Americans, which could lead to better treatment plans, as well as better services and support to family caregivers. The Center is seeking African American participants with mild to severe memory loss and a family member who will participate as a study partner. All research activities are free of charge, confidential and voluntary.

Research Updates

Your participation in our research program has resulted in many new findings. We have summarized some our recent studies, made possible only through your efforts. We have published these studies in leading scientific journals and presented them at national meetings of professionals and researchers. We would like to share them with you!

Hougham, GW, Stocking, CB, Patterson, MB, Danner, DD & Sachs, GA (1999). Informed Consent for Dementia Research: Preliminary Results. The Gerontologist 39. Hougham, GW, Danner, DD, Layman, DE, Patterson, MB, Sachs, GA, for the DRI-PAC Collaboration (Dementia Research: Informed, Proxy and Advance Consent) (2000). Dementia Research Enrollment Decisions: Does Race Matter? The Gerontologist 40. These studies address the question of whether persons with mild to moderate dementia are able to make decisions to participate in research. Early findings show that persons with dementia are able to weigh risks and benefits and decide on the type of research in which to participate. African-American participants were somewhat less likely to enroll in research studies, suggesting that new approaches are needed to recruit participants. In the research, we are also looking at what things affect the communication between interviewer and participant, like making eye contact, the length of sentences used, and how well the participant speaks and understands language. We plan to use this information to find better ways of training interviewers to explain research studies.

Neundorfer, MM, Fritsch, T, & Smyth, KA. The Effects of Race on the Stress Process in Caregivers of Persons with Alzheimer's Disease. Poster presented at 53rd Annual Scientific Meeting of the Gerontological Society of America, Nov. 2000. The purpose of this study was to determine the effect of race (White vs. African American) on the stress experienced by family caregivers of persons with Alzheimer's disease. We examined the effect of race on: caregivers' feeling of overload, that is, that they have too much to handle; role captivity, that is, that they feel trapped as a caregiver; and, finally, caregivers' report of their own feelings of depression. We found that white caregivers reported significantly more overload, role captivity, and depression than African American caregivers. It appears that African American caregivers view caring for their family member with dementia as less stressful that White caregivers. To confirm these findings, we need more African American caregivers in our sample.

Neundorfer, MM, McClendon, MJ, Smyth, KA, Stuckey, JC, Strauss, ME, & Patterson MB. A Longitudinal Study of the Relationship Between Levels of Depression among Persons with Alzheimer's Disease and Levels of Depression among their Family Caregivers. Accepted for publication in Journals of Gerontology: Psychological Sciences. We examined the effects, over time, of depression in persons with Alzheimer’s disease on depression in their family caregivers. We found, at the beginning of the caregiver’s participation in study, that the more the person with Alzheimer’s was depressed, the more the family caregiver was depressed. We also found that caregiver depression was related to shorter duration of caregiving, and greater dependency of the person with the illness in activities of daily living, such as shopping, driving, and money management. Wives and caregivers in poor health themselves were at particular risk for depression. Looking at change over time, we found that an increase in caregiver depression was predicted by two characteristics of the person with the illness: (1) increasing depressive symptoms, and (2) increasing dependency in activities of daily living. The more rapidly the person with Alzheimer’s became dependent, the more rapidly the caregiver’s depression increased. This study suggests the treatment of depression in persons with Alzheimer’s disease may improve not only the person’s mood, but also the mood of the family caregiver.

Ogrocki, PK, Hills, AH, & Strauss, ME (2000). Visual Exploration of Facial Emotion by Healthy Older Adults and Patients with Alzheimer's Disease. Neuropsychiatry, Neuropsychology, and Behavioral Neurology, 13, 271-278. We found that persons with Alzheimer's disease (AD) are able to see and understand facial expressions. However, when compared to healthy older adults, persons with AD have more difficulty and are slower. Looking at a person's eyes and mouth are the best way for us to understand how a person is feeling. We also found that persons with AD often look all over a person’s face, perhaps missing out on the clues the eyes and mouth provide about how a person feels. This study suggests that when we communicate with a person with AD it is important to use facial expressions and supplement this communication with tone of the voice and touch. This study shows that individuals with AD still can pick up on the emotions of others but need extra time and help.

Ripich, DN, Fritsch, T, Ziol, E, and Durrand, E (2000). Compensatory Strategies in Picture Description Across Severity Levels in Alzheimer's Disease: A Longitudinal Study. American Journal of Alzheimer's Disease, 15, 217-227. This study looked at changes in conversational abilities of persons with Alzheimer's disease (AD) over time. Persons with AD were asked to describe what was happening in a simple drawing of a mother washing the dishes and children playing in the background. We found that persons in the early stages of AD continue to retain their conversational abilities over time. However, as the disease advances, conversational abilities decline. However, we found that persons with advanced AD developed many strategies to make up for their loss of conversational abilities such as asking more questions, asking for help with the task, and expressing that they felt unsure. Most importantly the study showed that the desire to communicate is maintained even into the later stages of the AD.

Sperry, S.D., Strauss, M.E.& Landes, A.M. (2001). Relation of Apathy to depression, cognition, and daily function in dementia. Presented at the Annual Meeting of the International Neuropsychological Society, February 2001. Apathy, or the loss of motivation, is very common in illnesses that cause memory loss. We found higher levels of apathy in individuals who were in the more advanced stages of AD. Apathy was related to increased problems with daily living skills, such as performing chores and dressing. Apathy was also related to certain specific problems in thinking, such as being able to name common objects and learning new things. . Because apathy is strongly associated with cognitive and daily functioning problems, it is important for doctors to diagnose and treat apathy (or loss of motivation), much like they currently diagnose depression. It may be easy to mistake apathy for depression.

Autopsy Program Update

Just a reminder: The value of the information you have already shared with us increases when we can confirm whether your family member had Alzheimer's disease or another memory disorder through autopsy. Brain donation advances research into the causes and cure for Alzheimer's for future generations. It also may provide important information for your family, giving you certainty about the cause of death, and perhaps comfort that your family member received the appropriate care. If you need information or forms for enrolling in the autopsy program, please contact Laura Miodragovic at 216-844-6374.

Clinical Trials Update

We are eager to enroll postmenopausal women in a study investigating whether a combination of estrogen and donepezil hydrochloride (Aricept) slows decline in persons with Alzheimer's disease. This study will close enrollment March 31st.

A new clinical drug trial will soon be underway to investigate the role of an agent in individuals with severe Alzheimer's disease. We plan to start enrolling subjects in April.

If you are interested in these clinical trials, please contact Lani Holland at 216-844-6419.

REVEAL Study

The University Alzheimer Center (UAC) is conducting a study called REVEAL (Risk Evaluation and Education in Alzheimer's Disease). The purpose of the study is to explore the impact of receiving a genetic risk assessment for developing Alzheimer's disease (AD). People who have/had a parent with AD and have no signs of cognitive impairment or depression may qualify for this study. Participation may provide knowledge that can help families deal with issues related to genetics and AD. If you are interested in participating in this study or in learning more about it, please contact Melissa Barber at 216-844-6329.

When it is close to the time for you annual research visit, we will be sending out cards reminding you that Laura will be calling. Look for the note saying "It's time...". You can call to update her on your situation and your preferences, or she will call you to schedule the visit.

We will be mailing letters regarding your option to choose examination of the brain after death. These will go to families who have been undecided about autopsy. We want to make sure that you have everything you need to help you make an informed decision.

We are always welcoming new participants to our research. If you know of friends, neighbors, support group members, or others who are experiencing memory problems, please encourage them to call us at 216-844-6400.