Advanced dementia is morbid and condition older of Americans a common, costly among persons. Seventy percent with dementia will die in a nursing home (NH). Therefore, NHs are important sites of terminal care for these patients. Very little information exists describing the experience of older persons dying with dementia in the NH. Preliminary data suggest that the palliative care provided to this population is sub-optimal. The over-riding goal of the CASCADE study: Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life, is to address the major gaps in our knowledge needed to improve the care of NH residents with advanced dementia. In order to accomplish this goal, and building on the success of a pilot study, we propose the first large, prospective cohort study that will follow the clinical course of NH residents with advanced dementia during the end-stages of their disease and dying process for up to 18 months. The study will simultaneously follow the experience of their substitute decision-makers (SDMs) during those events and for up to 7 months after the residents' death.
Our aims are: 1. To establish a cohort of 250 NH residents with advanced dementia in order to describe their disease trajectory and clinical course, 2. To identify modifiable aspects of care associated with greater resident comfort during the follow-up period and dying process; 3. To repeatedly assess SDM decision-making over the residents' course and identify modifiable aspects of care associated with greater satisfaction with decision-making; 4. To repeatedly assess SDM satisfaction with end-of-life care and identify modifiable aspects of care associated with greater SDM satisfaction with end-of-life care; 5. To establish a cohort of 125 bereaved SDMs of deceased NH residents with advanced dementia to determine the incidence of complicated grief and to identify modifiable aspects of care associated with the development of complicated grief. As the first comprehensive, rigorous prospective investigation of NH residents with advanced dementia and their families, this study will promote the understanding of patient suffering, prognoses, decision-making, and family burden in this population near the end-of-life. The information derived from this study will make important clinical and policy-relevant contributions to the care of older persons with dementia who are dying and provide the basis for future intervention trials designed to improve that care.
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| Givens, Jane L; Lopez, Ruth Palan; Mazor, Kathleen M et al. (2012) Sources of stress for family members of nursing home residents with advanced dementia. Alzheimer Dis Assoc Disord 26:254-9 |
| Givens, Jane L; Prigerson, Holly G; Jones, Rich N et al. (2011) Mental health and exposure to patient distress among families of nursing home residents with advanced dementia. J Pain Symptom Manage 42:183-91 |
| Givens, Jane L; Prigerson, Holly G; Kiely, Dan K et al. (2011) Grief among family members of nursing home residents with advanced dementia. Am J Geriatr Psychiatry 19:543-50 |
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