The goal of the proposed career development plan is to prepare the candidate, Jane L. Givens, MD, MSCE, to become an independent investigator and leader in the field of aging. This award will provide four years of supervised geriatric health services research with the following specific objectives: 1. to conduct high quality research to address major knowledge gaps in our the current understanding of the burdens experienced by family members of with patients with advanced dementia in the nursing home (NH) setting;2. to develop methodological expertise in longitudinal analyses, qualitative research, scale development and the application of these approaches to the conduct of palliative care and aging research;and 3. to become an independent investigator conducting clinical and policy relevant research aimed at improving the end-of-life care for older patients and their families. The candidate will achieve these goals through mentored research, coursework, seminars and directed readings. Susan L. Mitchell, MD, MPH, an international leader in palliative care and dementia research, Associate Professor of Medicine at Harvard Medical School, and Director of the Palliative Care Research Program for Older Adults at Hebrew SeniorLife Institute for Aging Research (HSL IFAR), will serve as the primary sponsor. Dr. Givens'research and career development will be supported by the rich environment of HSL IFAR, a renowned center dedicated to gerontological care and research, and the training of young investigators. Her research training will be further supported by other local and regional institutions, including the Harvard Medical School Center for Palliative Care and the Harvard School of Public Health. The overriding goal of the proposed research is to better understand the sources of burden experienced by families of nursing home (NH) residents with advanced dementia, to measure the effect of these burdens on their mental health outcomes, develop a brief instrument to measure these burdens, and to identify modifiable factors that could reduce their burden and improve their mental health outcomes. These goals will be accomplished through combined methods including secondary analyses of existing data from a large, prospective study of NH residents with advanced dementia and their family members, primary data collection from in-depth interviews of families who participated in this earlier prospective study, and the development of a burden assessment instrument that will be evaluated in a newly recruited cohort of family members of NH residents with advanced dementia.
The specific aims are: 1. to describe and identify modifiable factors of resident care associated with better mental health outcomes among a prospective cohort of 323 health care proxies (HCPs) for NH residents with advanced dementia;2. to describe HCP involvement in medical decision- making among 323 HCPs of NH residents with advanced dementia and to examine the association between decision-making and HCP mental health outcomes;3. to conduct in-depth qualitative interviews with a selected sample of 30 HCPs of NH residents with advanced dementia to more fully understand their experiences during their loved one's illness, dying process and after death;and 4. to develop and validate a brief burden assessment instrument for HCPs of nursing home residents with advanced dementia. In addition to the proposed research plan, Dr. Givens will achieve her career goals through regularly scheduled meetings with her sponsor, Dr. Mitchell, as well as members of her advisory panel including: 1. Holly Prigerson, PhD. (Dana Farber Cancer Institute: psychosocial issues in end-of-life care, bereavement);2. Richard Jones, ScD. (HSL IFAR: measurement and analysis of mental health outcomes, scale development); 3. Kathleen Mazor, EdD. (University of Massachusetts: qualitative methods, scale development);and 4. Michele Shaffer, PhD. (Penn State University: biostatistics). Finally, Dr. Givens will supplement her mentored research experience with formal training acquired through coursework in advanced research methods (i.e. Longitudinal analysis, qualitative interviewing, scale development) and seminars (i.e. Harvard Medical School Center for Palliative Care Program in Palliative Care Education and Practice). Implications: As one of the first detailed studies of family members of NH residents with advanced dementia, the proposed work will promote our understanding of the mental health burdens facing over 4 million US families whose loved ones are experiencing the end-stages of this disease in this setting, and will set the foundation for future research aimed at developing and evaluating an intervention to lessen that burden. Moreover, by the end of the proposed career development award period, Dr. Givens will have acquired the necessary skills, experience, and track record of academic productivity to emerge as one of few independent investigators in geriatric health services research focused at the intersection of family member mental health and end-of-life care for persons with dementia, and will be poised to further the National Institute on Aging's mission to improve the health and well-being of older Americans.
Family members of patients with dementia suffer significant depression, anxiety, and grief, even after patients are institutionalized. Although 70% of persons with dementia die in nursing homes (NHs), the factors associated with adverse mental health outcomes among their family members have not been examined. As one of the first detailed studies of family members of NH residents with advanced dementia, this work will promote our understanding of the mental health burdens facing over 4 million US families whose loved ones are experiencing the end-stage of dementia in this setting, and set the foundation for future research aimed at developing strategies to lessen that burden.
|Dharmawardene, Marisa; Givens, Jane; Wachholtz, Amy et al. (2016) A systematic review and meta-analysis of meditative interventions for informal caregivers and health professionals. BMJ Support Palliat Care 6:160-9|
|Yates, Elizabeth; Mitchell, Susan L; Habtemariam, Daniel et al. (2015) Interventions Associated With the Management of Suspected Infections in Advanced Dementia. J Pain Symptom Manage 50:806-13|
|Givens, Jane L; Spinella, Sara; Ankuda, Claire K et al. (2015) Healthcare Proxy Awareness of Suspected Infections in Nursing Home Residents with Advanced Dementia. J Am Geriatr Soc 63:1084-90|
|Givens, Jane L; Jones, Richard N; Mazor, Kathleen M et al. (2015) Development and psychometric properties of the family distress in advanced dementia scale. J Am Med Dir Assoc 16:775-80|
|Givens, Jane L; Mezzacappa, Catherine; Heeren, Timothy et al. (2014) Depressive symptoms among dementia caregivers: role of mediating factors. Am J Geriatr Psychiatry 22:481-8|
|Mitchell, Susan L; Shaffer, Michele L; Loeb, Mark B et al. (2014) Infection management and multidrug-resistant organisms in nursing home residents with advanced dementia. JAMA Intern Med 174:1660-7|
|Tjia, Jennifer; Allison, Jeroan; Saczynski, Jane S et al. (2013) Encouraging trends in acute myocardial infarction survival in the oldest old. Am J Med 126:798-804|
|Mitchell, Susan L; Shaffer, Michele L; Kiely, Dan K et al. (2013) The study of pathogen resistance and antimicrobial use in dementia: study design and methodology. Arch Gerontol Geriatr 56:16-22|
|Lopez, Ruth Palan; Mazor, Kathleen M; Mitchell, Susan L et al. (2013) What is family-centered care for nursing home residents with advanced dementia? Am J Alzheimers Dis Other Demen 28:763-8|
|Givens, Jane L; Mitchell, Susan L; Kuo, Sylvia et al. (2013) Skilled nursing facility admissions of nursing home residents with advanced dementia. J Am Geriatr Soc 61:1645-50|
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