The New York Consortium for Alzheimer Research and Education (N.Y.C.A.R.E.) is the joint effort of the New York City
Chapter of the Alzheimer’s Association and the Education and Information Cores of the Alzheimer’s Centers at Columbia
University – College of Physicians and Surgeons, Mount Sinai Medical Center, and New York University School of Medicine,
funded by the National Institute on Aging.
Maintaining Quality of Life: A Delicate Balance
One of the biggest challenges for caregivers is helping family this stage if they want to and are able to share their experiences.
members with Alzheimer’s disease maintain a good quality of life. In the middle stage of AD, helping the person to engage in
Many families wonder how quality of life can be measured and meaningful activities, to be part of family life and to maintain self
whether there is anything they can do to improve their relative’s esteem in the face of narrowing options for independent functioning
quality of life. Knowing the specific effects of the disease, especially its become a central issue. The person’s stress threshold is lower, and
effect on a person’s ability to take the initiative to begin activities or agitation may result from an overly stimulating environment.
social interactions, to tolerate stress and to make reasoned judgments Nevertheless, it is possible to maintain the social and activity
can guide family and friends in balancing the risks and benefits of components of quality of life for a person at this stage of AD either at
different levels of support and decisions about care so as to maintain home or at a day care center, if one assesses his or her remaining
the highest possible quality of life for the person with AD and his or abilities and works within his or her limitations.
her family and friends. At the end stage of AD, questions about quality of life can involve
Family members will continually grapple with maintaining such delicate issues as the kind of medical treatment that should be
delicate balances. They must balance the need for the person with provided, how to discern whether the person is in pain, and whether
dementia to be (and feel) safe with the desirability of maximizing or not to use feeding tubes. These kinds of decisions can weigh
opportunities for independent functioning. Family members must try heavily on family members who may themselves be exhausted by the
simultaneously to provide enjoyable and stimulating experiences and effects of the illness, which may have spanned many years.
avoid situations that cause the person with dementia to suffer Traditional measures of quality of life (QOL) were designed for
overwhelming stress. The person with AD also has to balance risks and use in clinical practice and research, health policy evaluations, and
benefits and may need the help of a relative or close friend to choose general population surveys. These measures have frequently been used
between participating in events or making a strategic withdrawal when by economists to determine the relative costs and benefits of medical
involvement is no longer reasonable. In addition, throughout the treatments. Scales such as the Rand SF-36 (1) rely upon patient self-
illness, the quality of life of the person with AD and that of his or her reporting and are now widely utilized by managed care organizations
primary caregiver and other family members are held in a delicate and by Medicare for routine monitoring and assessment of care
balance. It is essential that the well-being of one member of the family outcomes in adult patients. The SF-36 assesses 8 separate components
not be sacrificed to that of another. of functioning and well-being: (1) limitations in physical activities
The balance between safety and independence, between under because of health problems; (2) limitations in social activities because
stimulation and over stimulation will change with the progression of of physical or emotional problems; (3) limitations in usual role
the illness. The balance in the relationship will also shift, as the degree activities because of physical health problems; (4) bodily pain; (5)
of collaboration and kinds of communication which are possible general mental health (psychological distress and well-being); (6)
diminish over time. The responsibility for assuring the quality of life of limitations in usual role activities because of emotional problems; (7)
the person with AD is more and more in the hands of those who care vitality (energy and fatigue); and (8) general health perceptions.
for him as the illness becomes more severe. Measures such as the SF-36 do not fully describe what family
When a person is in the early stages of Alzheimer’s disease, the members think of as quality of life for people with AD.
dilemmas about how to weigh safety and independence are often Recently, researchers have become interested in assessing the
reflected in such questions as whether the person should continue to quality of life of people with AD using instruments specifically
drive a car, manage financial matters, or travel alone. However, a designed for that purpose. Their work is based on the ideas of Powell-
person in the early stage can be encouraged to take part in family life, Lawton who conceptualized QOL of a person with dementia as
continue with a hobby, enjoy the grandchildren, and be a caring having four dimensions: (1) psychological well-being, (2) behavioral
partner to his or her spouse. competence, including physical health, functional ability, time use and
The issues around maintaining quality of life of a person at the social behavior, (3) the environment, and (4) overall perceived QOL.
early stage of Alzheimer’s disease may be more complex than at any Several researchers have developed instruments, based on this concept,
other. The person’s awareness of the life transforming losses and the that ask questions directly of the person with dementia, rather than
role changes that ensue can be extremely distressing to him or her the family member or caregiver. These instruments, such as the QOL-
even when they are handled with the utmost thoughtfulness. The loss AD, developed by Rebecca Logsdon and her colleagues, and the
of the person’s income and other contributions to the well-being of DQoL, developed by Meryl Brod, are now being used in clinical trials
the family may have a profound impact on him or her and on other of drug and non-drug treatments for people with AD and their family
family members. Support groups may be very valuable for people at caregivers. While these instruments are useful for gaining an
(con’t on p.4 of insert)
Columbia University • Taub Institute • Clinical Trials
Vitamin Study for Alzheimer’s disease (NYSPI) / Columbia University. NYSPI serves as the
We are seeking men and women with mild to moderate Alzheimer’s coordinating center. Please contact the program manager at
disease to determine whether the reduction of homocysteine levels 212-543-6132.
with vitamin supplements (B12, B6 and folate) may be beneficial in
slowing the progression of Alzheimer’s disease. For more Mood and Memory Study
information, please call Ruth Tejeda at 212-305-7661. A study examining the benefit of treatment for depression in
people (age 50+) with combined depression and mild memory
Mild Memory Loss Study problems is currently being conducted. In those depressed patients
We are seeking men and women, age 45 or older, with mild but whose memory problem persists, further treatment with
noticeable memory loss, to participate in a 12-month, placebo- medication to improve memory will be offered. If interested,
controlled study to evaluate the effectiveness of donepezil please contact Jocelyn Cheng at 212-543-5067.
(Aricept), on memory impairment. For more information, please
contact Evelyn Dominguez at 212-305-2371. Other Studies
Memory Problems Study
Treatment of Behavior Problems in Lewy We are seeking English and Spanish speaking participants, 50 years
Body Dementia and Alzheimer’s Disease Study of age or older with memory problems to participate in a long-
Psychosis (hallucinations or delusions) and agitation often term follow-up study examining the clinical and brain imaging
accompany dementia. Unfortunately, when dementia is markers for the early diagnosis of Alzheimer’s disease. If interested,
complicated by parkinsonian symptoms (such as rigidity, slowed please contact Dr. Matthias Tabert, Ph.D. at 212-543-5046.
movements, shuffling gait), the drugs commonly used to treat
behavioral problems can worsen these parkinsonian symptoms. We Normal Aging and Memory Study
are seeking men and women, age 50 and older, with Alzheimer's We are seeking men over the age of 70, in good health, without
disease or Dementia with Lewy Bodies who also have memory problems who wish to participate in a research study on
parkinsonian symptoms with psychosis and/or agitation to understanding normal aging and memory, may earn $10/hr at
participate in a 12-week study to determine the effectiveness of Columbia-Presbyterian Medical Center (Research Foundation For
the atypical antipsychotic quetiapine (Seroquel) and the Mental Hygiene). No medication is prescribed. Call Maddy
cholinesterase inhibitor donepezil (Aricept) for the treatment of Goodkind at 212-543-5956 for more information. Spanish-
those behavior-related symptoms. For more information, please speaking participants welcome.
contact Ruth Tejeda at 212-305-7661.
Cholesterol-Lowering Treatment Genetic Linkage Study
and Alzheimer’s Disease Study We are seeking Caribbean Hispanic families from the Dominican
Some evidence suggests a link between cholesterol and Alzheimer's Republic for a study to identify genes that may increase the risk
disease-type changes in the brain. Other studies suggest lowering for AD. If you have at least two living family members diagnosed
cholesterol may reduce these changes in the brain. We are seeking with AD, please call Vincent Santana at 1-877-636-5677 or
English and Spanish-speaking men and women, age 50 or older, Jennifer Williamson at 212-305-4655.
with mild to moderate Alzheimer's disease, to participate in a 12-
15 month, placebo-controlled study to determine if the use of the The Gift of Knowledge — Brain Donation Program
cholesterol-lowering drug, simvastatin (Zocor), will be effective in Brain donation allows valuable information to be obtained
slowing the progression of Alzheimer's disease. For more regarding normal aging and diseases that affect memory. This
information, please contact Ruth Tejeda at 212-305-7661. information may be useful towards the goal of developing more
effective treatment strategies. If you or a family member wish to
Antipsychotic Medication Treatment of Psychosis and learn more about this program, please call Arlene Lawton, RN at
Behavioral Dyscontrol in Alzheimer’s Disease Study 212-305-9086.
A research study funded by the National Institute of Aging will be
treating people with Alzheimer's disease who suffer from Lucy G. Moses Center for Memory and Behavioral
hallucinations, delusions, agitation, and/or aggression with Disorders
risperidone, an FDA-approved antipsychotic medication. Each Changes in memory and thinking abilities can occur from a
eligible participant must have a family member or caregiver who variety of conditions, not just Alzheimer’s disease. Taub Institute
can assist with adherence to treatment and provide information specialists offer a thorough multidisciplinary evaluation of memory
during the research study. There are sites at four academic sites: and thinking difficulties. The Neurological Institute, Columbia
Medical University of South Carolina, Charleston, SC (MUSC); University, 710 West 168th Street, New York, NY 10032;
University of Iowa, Iowa City (U of I); VA Medical Center, Columbia Presbyterian Eastside, 16 East 60th Street, New York,
Tuscaloosa, Alabama (AL) and New York State Psychiatric Institute NY 10022. Telephone Contact: 212 305-6939.
New York University School of Medicine
Silberstein Institute For Aging and Dementia • Current Studies
CLASP-AD Huperzine A
(Cholesterol-Lowering Agent to Slow Progression of AD): Patients age 55 and older with Alzheimer’s disease may be eligible for
Patients age 50 and older with mild to moderate (AD) have an a new study to determine the effectiveness of Huperzine A to treat
opportunity to participate in a study to evaluate whether an FDA the symptoms of AD. Huperzine A is a natural product extracted from
approved cholesterol-lowering medication slows the progression of a Chinese herb. There is growing evidence that huperzine A not only
symptoms. Participants must not currently be receiving or require compares favorably in symptomatic efficacy to cholinesterase
treatment to lower cholesterol. This is a 21-month trial. Concurrent inhibitors in current use, but additionally has both antioxidant and
use of other medications for the treatment of AD is allowed. Please neuroprotective properties, effects which maybe relevant in the
contact Suzanne D’Agostino at 212-263-5708 for more information. treatment of AD. For information and to find out if you or someone
The VALID Study (VALproate In Dementia) you know may be qualified, please call Suzanne D’Agostino at
Previous research has shown that Valproate, an anticonvulsant drug, 212-263-5708.
may be helpful in slowing AD and some of its symptoms. The VALID Longitudinal Study of Human Gait
study will help find out whether it works. Patients age 50 and older (walking ability)
who have been diagnosed with probable AD, will have the The purpose of this federally funded grant project is to determine
opportunity to participate in this study that will test whether Valproate whether measures of human gait function can improve the early
is effective in delaying, weakening, or preventing difficult behaviors in detection (and accurate prediction of possible subsequent decline) of
people with early stage AD, and whether it has any effect on slowing Alzheimer’s disease, particularly among elderly differing widely in
the progression of AD itself. Participants must not have experienced levels of education. This project will specifically test gait function,
agitation or psychosis since the onset of AD. Study participants will be using both computerized and noncomputerized assessment
assigned at random to receive Valproate or placebo (inactive pill), and techniques. The gait assessments require about 15 – 20 minutes to
will be regularly monitored during the 26-month research study by complete. The study is open to participants with normal cognitive
physicians and qualified health care professionals who specialize in function, mild cognitive impairment (MCI) and Alzheimer’s disease,
dementia. For more information about this pharmaceutical study, call enrolled at the NYU Alzheimer’s Disease Center. Please contact
the Clinical Trials Coordinator, Suzanne D’Agostino at Alvin Wagner at 212-263-2619.
An Innovative Psychosocial Intervention for Adult-Child
Homocysteine Caregivers of Parents with Alzheimer’s Disease
(VITAL-- Vitamins to slow Alzheimer’s disease): A new study of an education and support intervention designed to
Patients age 55 and older with mild to moderate AD have an reduce the stress, anxiety, and depression frequently experienced by
opportunity to participate in a study to evaluate whether a Vitamin B people whose parents are in the moderate stage of Alzheimer’s disease.
Complex can slow the clinical progression of the disease. A blood The goal is to help caregivers provide a more stimulating
protein called homocysteine is elevated in AD, and people with high environment for their parents and have a positive experience
levels of this protein seem to have a greater risk of developing the interacting with them and providing care. Everyone who enrolls will
disease. The purpose of this study is to test whether lowering levels of receive self-teaching materials especially written for this project For
homocysteine with B vitamins can slow further decline in patients information about this study, please call Olanta Barton, Study
with AD. This is an 18-month trial. Sixty percent of the participants Coordinator at 212-263-5710.
will randomly receive a Vitamin B Complex, while forty percent
receive placebo (inactive substance). Concurrent use of other Upcoming Study
medications for the treatment of AD is allowed. For more
information about this pharmaceutical study, call the Clinical Trials Amyloid Drug
Coordinator, Suzanne D’Agostino at 212-263-5708. A clinical trial of a new anti-amyloid drug for AD will begin this
summer. For further information, please call Suzanne D’Agostino at
Mild Cognitive Impairment Study 212-263-5708.
If you or someone you know are aged 45 to 90 and have mild
memory loss, NYU School of Medicine is taking part in a national
clinical research study to evaluate the safety and effectiveness of an
oral, investigational medication for mild cognitive impairment.
Qualified participants will receive complete study-related physical
exams, lab work, electrocardiograms and cognitive evaluations at no
charge while taking part in this study. For information and to find
out if you or someone you know may be qualified, please call
Suzanne D’Agostino at 212-263-5708.
Mount Sinai School of Medicine • Alzheimer’s Disease Research Center
Homocysteine (HC) Study provide their “intent” to consent for this program. There are several
benefits to participation and we have specially trained staff available to
The purpose of this randomized, placebo-controlled study is to
discuss these benefits, the donation process, and any related concerns
determine whether reduction of homocysteine levels with high dose
that you and your family might have. For more information, please
folate/B6/B12 supplementation will slow the rate of cognitive
contact Karen Dahlman, PhD at 212-241-1844. GCO #84-119 and
decline in subjects with Alzheimer’s disease. Homocysteine is an
#79-141 MSSM IRB approved through 3/31/05
amino acid (a building block of proteins) found in the bloodstream.
Blood levels of homocysteine are elevated in AD, and these high Note: Spanish-speaking participants are welcome in all studies.
levels may contribute to the disease. Patients over the age of 54 with All study participants receive reimbursement for any related expenses.
Alzheimer’s disease are eligible. All study medications are free of Participants without AD receive monetary compensation for their
charge. For more information, please contact our research time.
coordinator Jessica Stern at 212-241-8329. GCO#91-208(11),
If you are interested in any of the above research studies, please
MSSM IRB approved through 2/17/05
contact the Alzheimer’s Disease Research Center at 212-241-8329.
A Trial of an Insulin-Sensitivity Enhancing Agent Mount Sinai also has Satellite clinics specializing in AD and other
to Improve Cognition in Alzheimer’s Disease Memory Disorders located at:
This study uses an insulin-regulating medication to enhance the Elmhurst Hospital in Queens: 718-334-3983
activity of insulin degrading enzyme so that it can break down Bronx VA Medical Center: 718-584-9000 x5199
β-amyloid proteins. People with Alzheimer’s disease cannot properly Phelps Memorial Hospital in Westchester: 914-366-3669
break down β-amyloid proteins, which accumulate to form plaques
in the brain. This medication could interfere directly with the disease
process by blocking the formation of plaques and hopefully prevent Maintaining Quality of Life: A Delicate Balance
the development and progression of the disease. Patients with (continued from front page)
Alzheimer’s disease are eligible. For more information, please call our
ADRC research coordinator at 212-241-8329. GCO #01-1223
MSSM IRB approved through 1/14/05 understanding of QOL in persons in the early stages of AD, they
have limitations in long-term studies that are designed to assess
Statin Study change over long periods of time. If one wants to measure change in
We are seeking patients with Alzheimer’s disease to participate in this QOL stemming from a particular treatment, it is essential that the
multi-center, randomized, double-blind, placebo-controlled trial of instrument be equally valid at the later time point as at the time
simvastatin, a cholesterol-lowering drug. This study will test whether before treatment began. When the person’s functional abilities decline
this drug can slow the progression of symptoms in AD. For more to the point where they are less able to comprehend the questions,
information, contact our ADRC research coordinator at 212-241- their answers may have a different meaning than they would at an
8329. GCO #91-208(10) MSSM IRB approved through 11/14/05 earlier stage.
Protective/Risk Factors for One of the most important components of QOL, whether
Alzheimer’s Disease in Healthy Adults measured by a general instrument such as the Rand SF-36 or a
This study aims to identify biological factors that might either specific instrument designed for people with AD or their family
predispose or protect individuals from developing Alzheimer’s disease. members, is cognitive and functional ability, both of which decline as
The 2-3 hour interview would be completed at the subjects’ home. the disease progresses. However, other elements of QOL, such as
A small blood sample is drawn to allow investigators to examine engaging in social interactions and participating in meaningful
possible protective factors. Participants will be compensated for their activities can be maintained, if the family members of the people
time. Men and women who are 85+ years old with no memory with AD understand and accept the impact of the illness on their
impairment or dementia will be eligible for the study. If interested, relative, and are able to creatively work with their limitations and
please call the Family Studies Office at 718-584-9000, Extension retained strengths.
2713. GCO #84-119 MSSM IRB approved through 3/31/05 Researchers continue to try to improve the design of
instruments to measure QOL and strategies to improve QOL for the
Brain Tissue Donation Program person with the illness and the family. However, without needing a
The goal of this program is to improve existing treatments and to measurement tool, family members have a keen sense of what kinds
develop new treatments for AD, which is not possible without the of experiences enrich the lives of their relatives with AD and seek to
generosity and altruism of individuals who partner with Mount Sinai provide them.
by participating in our brain donation program. Therefore, men and 1. Ware, J.J., and Sherbourne, C.D. (1992). The MOS 36-item short-form health survey (SF-36).
women, with and without memory impairment are eligible to I. Conceptual framework and item selection. Medical Care, 30, 473-483.