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Studies of Interest Family Caregiver Writing Study "Sandwich Generation" Caregiver Study
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To help serve you better, we are working to update our information and referral lists to be available to you on this website. Please check back weekly for further listings.
The following lists were compiled from information submitted to us by the individual agencies. The lists are in no way a recommendation or endorsement to any one agency; rather, it is a referral list of available options for families and persons living with Alzheimer's disease or related dementias.
For further information on any of the following services contact our chapter office at 319.294.9699 or toll-free at 800.272.3900.
Adult Day Services
An adult day center provides care outside the home and is designed to meet individual needs while supporting strengths, abilities and independence.
Assisted Living Facilities
Assisted living facilities (also called board and care, adult living, supported care) bridge the gap between living independently and living in a nursing home. Assisted living typically offers a combination of housing and meals, and supportive and health care services. The federal government does not regulate assisted living, and definitions of assisted living vary from state to state.
Assisted Living Facilities - Chapter Area
Neurologists
A neurologist is a medical doctor trained in the diagnosis and treatment of nervous system disorders and will be able to answer the question, "Is it Alzheimer's disease?". NOTE: Some insurance companies may require a physician's referral.
Memory Disorder Clinics
The Memory Disorders Clinic evaluates and treats persons exhibiting signs of dementia. The clinic strives to allow persons with memory disorders to stay in their homes as long as possible. NOTE: Some insurance companies may require a physician's referral.
Legal Services
Putting legal plans in place is important for everyone, but settling these plans is especially vital for the person with Alzheimer's disease or another related dementia. The sooner legal planning can begin, the more the person with dementia may be able to participate. Legal planning includes making plans for health care and long-term care coverage, making plans for finances and property, and naming another person to make decisions on behalf of the person with dementia.
People 60 and over can get FREE legal advice from the
Legal Hotline for Older Iowans
The Legal Hotline provides free, confidential legal advice and referrals Monday through Friday, between 8:30am and 5:00pm.
Call 1.800.992.8161
Financial Services
Home Health Agencies
Home health agencies provide care in the home making it possible for individuals with dementia to stay in their homes longer. Services vary from assistance with daily living activities to providing skilled nursing care.
Home Health Agencies- Chapter Area
Nursing Homes
You may reach a time when your loved one can no longer recieve in-home care. When that time comes, you will need to find the place that fits all of your specifications.
Black Hawk County
Johnson County
Linn County
Dementia Specific Units
Alzheimer special care units are designed to meet the specific needs of individuals with Alzheimer's disease and other dementias. Special care units can take many forms and exist within various types of residential care. Such units most often are cluster settings in which persons with dementia are grouped together on a floor or a unit within a larger residential care facility.
Dementia Specific Units- Chapter Area
Counseling Services
Counseling Services provide professional guidance in resolving personal conflicts and emotional problems. Services on referral list include: Family Counseling, Life Adjustment Counseling, Geriatric Counseling, and Grief & Loss Counseling.
Counseling Services - Chapter Area
Psychiatrists
Persons with Alzheimer's disease may experience behavioral and psychiatric symptoms that can cause personality changes and agitation. In the early stages of the disease, people may experience irritability, anxiety, or depression. In later stages, other symptoms may occur, such as sleep disturbances, physical or verbal outbursts, emotional distress, restlessness, delusions, or hallucinations. Psychiatry is a medical specialty concerned with the prevention, diagnosis, and treatment of mental illness. Psychiatrists are MDs who may also have additional training in a psychiatric subspecialty, such as geriatric psychiatry. Psychiatrists can prescribe medication, which can be effective in the management of some behavioral and psychiatric symptoms.
Hospice Providers
Hospice care is provided to individuals who are terminally ill in their homes or in a care setting, generally with an expected survival of six months or less. Hospice is a benefit of Medicare, most state Medicaid programs, and many private health insurance plans. Members of hospice teams have special training in end-of-life care and can provide oversight of medical care, counseling services, medical equipment and supplies, planning for end-of-life needs, and bereavement support.
Hospice Providers - Chapter Area
Driving Assessment Information
Driving is a complex activity that requires quick thinking and reactions, as well as good perceptual abilities. For the person with Alzheimer's disease, driving becomes a safety issue. While he or she may not recognize that changes in cognitive and sensory skills impair driving abilities, you and other family members will need to be firm in your efforts to prevent the person from driving when the time comes. There are a number of steps you can take to assess the person's ability to drive.
Driving Assessment Information - Chapter Area
Adult Protective Services
Adult Protective Services is responsible for investigating abuse, neglect, and exploitation of adults who are elderly or have disabilities.
Adult Protective Services - Chapter Area
Gammaglobulin Alzheimer's Partnership (GAP) Study
Have you (or someone you know) been diagnosed with mild to moderate Alzheimer's disease? If you are between the ages of 50-89 years old, have been diagnosed with probable mild-to-moderate Alzheimer's disease, and have a partner (spouse, child, sibling or other caregiver) who can be present at every study visit, then you are eligible to participate in this study.
This is a 20-month study including 46 total visits lasting from 2-5 hours per visit. Participation is voluntary, and compensation is available. For more information, please contact Karen Ekstam Smith at the University of Iowa College of Medicine at 319-353-5158.
Click here to read participant letter
Click here to read participant flyer
Memory Disorders Registry
Research that can prevent, delay or slow progression of Alzheimer’s disease and other related dementias is one of the most vital health imperatives that we will face as we move towards the middle of the 21st century. That is why the Alzheimer’s Association East Central Iowa Chapter is pleased to inform you of an exciting new research opportunity available in our area. It is called the Memory Disorders Registry, and is being conducted at the University of Iowa Hospitals and Clinics in Iowa City.
The purpose of this study is to research memory disorders and other cognitive changes that occur with aging. The research team at the University of Iowa would like to create a registry or database of older persons who may be interested in participating in various studies designed to learn more about memory disorders associated with aging, including Alzheimer’s disease and related disorders. The information collected in this registry will help the research team to learn more about risk factors that may be associated with memory changes. Individuals who agree to participate in the memory disorders registry may have the opportunity to be a part of multiple memory related studies.
Once an individual agrees to take part in the study, his or her involvement will last indefinitely, though requests to remove someone from the registry can be made at any time. Information regarding a person’s medical and research history will be collected in a database, and this information will be kept on file so that the research team may contact the individual regarding this or other research studies.
By agreeing to place yourself or your loved one’s information in the registry, you are not obligated to participate in any studies. If you or your loved one’s profile meets the criteria for a particular study, you will be contacted by the research team and at that time can either accept or decline the invitation to participate in the study. For more information or to obtain a consent form to participate in the registry, please contact the Visual Function Laboratory at the University of Iowa Hospitals and Clinics at 319.356.0808 and mention the Alzheimer's Association.
Family Caregiver Writing Study
Family caregivers of persons with Alzheimer's disease or related dementias are invited to participate in a research study conducted by the University of Iowa that will learn about your caregiving and your health.
The study will require three days, 20 minutes per day, for online writing sessions. Internet and computer access is required for participation. You will be asked to write about your thoughts and feelings regarding caring for a family member or activities related to caring for one's self. Following the writing sessions, you will be asked to complete online survey forms on two more occasions. In total, the time commitment for participants over a one-month period should not be more than six hours.
If you are interested in participating or have other questions contact Dr. Howard Butcher at 319.335.7039 or by email at howard-butcher@uiowa.edu.
*Note: Participants will be offered compensation.
Examining Perceived Stigma in Persons with Dementia
Researchers at the University of Iowa and University of Illinois Colleges of Nursing are conducting a study of stigma among persons with dementia and their caregivers who are in the early stages of the disease. Stigma is social disapproval or negative attitudes toward individuals with a condition such as a progressive memory loss. People may treat the “stigmatized” person differently (e.g. stop calling you to do things) which could decrease self-esteem, social support, sense of wellbeing, and change the way family members relate to the person. Consequently, the person with dementia may internalize the negative responses from others which could result in depression, feelings of powerlessness and shame about the disease, and increase the person with dementia’s vulnerability to the illness.
Nurse researchers at the University of Iowa want to better understand the experience of stigma in persons with progressive memory loss and their close family members. They hope to identify how stigma affects quality of life in persons with memory loss and to eventually develop programs to help alleviate the effects of stigma in persons with memory loss.
Participants interested in helping us know more about this important and pervasive issue should be:
• An adult with a diagnosis (within one year) of progressive memory loss, such as Alzheimer’s disease or dementia who:
o Lives in the community: home or assisted living, and
o Has a close family member who is also willing to participate, and
o Is willing to commit to participating in an 18-month study.
• Family members of persons with progressive memory loss who qualify to participate and are willing to commit to an 18-month study.
Participants will be reimbursed $10 per visit (total $40).
If interested in participating or have any questions about the study, please contact Dr. Kathleen Buckwalter, Ph.D. at (319)353-3019 or via email at kathleen-buckwalter@uiowa.edu
"Sandwich Generation" Caregiver Study
Are you a caregiver for a parent with dementia?
Do you have a minor child who lives with you?
If so, please contact Lisa Schumacher, a graduate student from the Univerity of Iowa. Lisa is conducting a study and is interested in learning more about caregivers in the "Sandwich Generation". If you are interested in participating in this study, please contact Lisa at 319.400.0628 or via email at lisa-schumacher@uiowa.edu.
Partners of People with Early-Onset Alzheimer's
The purposes of this study are: 1) to examine grief and burden among early-onset dementia caregivers who are caring for their partners; and 2) to better understand the feelings of grief and loss experienced by the partner who is experiencing the early-onset dementia. Instructions to participate are as follows:
- If your partner has been diagnosed with early-onset Alzheimer’s, you are their primary caregiver, and you currently live together (“early onset” means that the person you care for was diagnosed with Alzheimer’s disease before the age of 65).
- Seeking 75 participants from across the United States to complete and return four survey instruments. Two of the instruments ask questions about caregiver burden and feelings of loss and grief, while the third instrument is a scale that helps you to estimate your partner’s level of impairment. The final instrument asks general questions about you and your caregiving situation. The four instruments will take approximately one hour to complete.
- After completing the survey instruments, you are asked to mail them back in the postage paid envelope provided with the surveys.
- Included with the surveys, you will receive a $5.00 Starbucks gift card to thank you for participation.
If you are interested in participating in this study or have any further questions, please contact Dr. Jacquelyn Frank at the University of Indianapolis: (317) 791-5944 or jfrank@uindy.edu.
