Investigator, OREC
Jaclene A. Zauszniewski, PHD, RN-BC, FAAN
Kate Hanna Harvey Professor of Community Health Nursing, Frances Payne Bolton School of Nursing, Case Western Reserve University
Can you please tell me what key questions your research is trying to answer?
I am currently serving as the PI on two NIH-funded clinical trials with family caregivers of persons with dementia. The first clinical trial is a supplementary arm of my clinical trial with family members of persons with bipolar disorder in which we are examining the needs and preferences for self-management interventions to reduce stress and promote mental health of the family caregivers. In that trial, we are randomly assigning the caregivers of persons with dementia (either residing in-home or in a care facility) to one of four groups to: 1) examine differences across the four groups on caregiver health over time; 2) explore relationships between caregiver needs and preferences and relevant contextual factors (care recipient symptoms, caregiver reactions, and caregiving involvement); and 3) build caregiver profiles that are associated with their needs and preferences for intervention.
The second clinical trial is focused on the examining of similar needs and preferences for self-management interventions across three types of dementia “carers” with a specific focus on those who have had a recent transition (i.e. within six months) to caregiving in the home, to partnering in care with a care facility, or to bereavement following loss of their care recipient. In this trial, the “carers” are randomized to one of three groups to: 1) examine the effects of a health self-management intervention delivered by need or preference in family carers of persons with dementia on caregiving responses and health outcomes over time; and 2) determine whether differences exist among in-home caregivers, care partners, and bereaved caretakers in carer responses and health outcomes over time. Outcomes for both clinical trials include health risks and physical and mental health.
Can you please tell me about your role in the CADRC?
At the present time, I am providing support to the Outreach, Recruitment, and Engagement Core (OREC). My recent involvement is introductory to a future collaborative relationship with the CADRC in which I plan to assist the study team in reaching out to and engaging with caregivers in order to ultimately involve them, persons with dementia, and their families in dementia research.
How did you get interested in dementia research?
As a psychiatric / mental health nurse, I have always been intrigued by the various symptoms and behaviors that accompany mental health problems. However, while still working in clinical practice years ago, I quickly learned that the person affected by a mental disorder was not the only one who experienced distress, confusion, anguish and a whole host of other negative thoughts or feelings. Rather, it was indeed a family experience. Although I have always remained concerned and care deeply for those with mental disorders, my attention was drawn to family members who would be the caregivers and supporters of their mentally ill family members once they were discharged from inpatient or outpatient settings. Thus, I became interested in determining ways to keep these family caregivers healthy so that they would be able to continue to provide the care and support needed by their mentally ill family member. These family members are desperately needed; if their mental or physical health deteriorates, there may be no one to care for their family member, whose mental health would likely decompensate. Accordingly, my research has focused on family caregivers of persons who may have a variety of mental health conditions, one of which may be dementia. The increased opportunities for obtaining funding from the NIH in the area of caregiving research, particularly in the area of dementia caregiving sparked my interest to test interventions in this population. Ironically, after my research to begin development and testing on interventions for dementia caregivers was well underway (2009-2012), I myself became a caregiver for a parent with dementia and lived through all three transitions of the dementia caregiving career.
What do you think has been the most helpful to your career so far?
Thus far in the development of my research career, I have identified three necessary elements: mentorship, collaboration, and funding opportunities. From early on in my career (and still to date), I was extremely fortunate to be mentored by an accomplished gero-psychiatric nurse who was both a master clinician and a successful researcher. She provided guidance as I began to formulate my ideas regarding the development of self-management strategies for family caregivers. Her specialized area of research expertise was in the area of dementia care and caregiving and she inspired and encouraged me to pursue that area as well. However, I also learned very quickly that although I was developing expertise and a program of research in my field (nursing), there were many other, related areas of research in which I had little or no expertise. I was fortunate to find colleagues with shared research interests but diverse expertise (i.e. from psychology, communication sciences, sociology, social work, organizational behavior, biostatics, and medicine, to name a few) that enriched my research and moved it into directions where it might not have otherwise gone. Finally, a number of NIH funding opportunities have been available through the years in the forms of program announcements and requests for proposals for research involving the care and treatment of persons with dementia and interventions for their caregivers. Funding is important for developing and testing treatment innovations and for conducting randomized controlled clinical trials of sufficient magnitude to provide meaningful findings that can translate into future practice.
Specific to the ADRC, what do you think has been helpful to your research?
As a new member of the Outreach, Recruitment, and Engagement Core (OREC), I am just beginning to identify and establish relationships with other team members. However, I already see many opportunities for collaboration in research along with the development of synergistic recruitment strategies that would be mutually beneficial for future research with persons with dementia and their family caregivers.
What does the future of dementia research look like to you?
As the population continues to age and with increasing longevity, there is an increased likelihood for developing some form of dementia. At the same time, research continues to investigate mechanisms for early diagnosis and treatment and perhaps an eventual cure for dementia. Although research has come a long way through the years, there is still much more to be discovered. And, as long as people continue to have dementia, there will be family caregivers in need of supportive interventions to keep them healthy. However, once effective interventions are identified, it will always be of paramount importance that the needs and preferences of intervention recipients (i.e. family caregivers) are considered to ensure that the interventions are tailored and sustainable over time. It is my hope that the NIH will continue to value dementia research and the need to keep the momentum going as scientists across multiple disciplines work toward promoting the best quality of life for those with dementia and those who care for them by providing funding through multiple institutes, including the NIA, NINR, and NIMH.