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Understanding the lived experience of couples across the trajectory of dementia

了解患痴呆症的夫妇的生活经历

基本信息

批准号：
10270548
负责人：
Mary Sherman Mittelman
金额：
$ 5.68万
依托单位：
NEW YORK UNIVERSITY SCHOOL OF MEDICINE
依托单位国家：
美国
项目类别：
财政年份：
2019
资助国家：
美国
起止时间：
2019-09-15 至 2024-05-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/10270548
关键词：
Activities of Daily Living Address Adult Adult Children Affect Aging Alzheimer&apos s Disease Alzheimer&apos s disease risk Area Attention Back Behavior Behavioral Caregivers Caring Characteristics Child Chronic Disease Clinical Trials Design Cognition Cognitive Collaborations Counseling Couples Cross-Sectional Studies Custom Data Dementia Developed Countries Development Diagnosis Disease Elderly Emotional Family Family Caregiver Family member Focus Groups Formal caregiving Foundations Future Generations Goals Grief reaction Health High Prevalence Home Impaired cognition Impairment Incidence Individual Intervention K-Series Research Career Programs Learning Literature Longitudinal Studies Measures Mediator of activation protein Mental Health Mentorship Modeling New York Onset of illness Outcome Parent-Child Relations Parents Participant Personal Satisfaction Persons Play Psyche structure Psychosocial Assessment and Care Public Health Quality of life Race Reporting Research Research Methodology Research Personnel Residential Treatment Rewards Role Sampling Self Efficacy Social support Source Spouses Statistical Models Symptoms Time Training Translational Research Typology Universities Work aging population base care costs care recipients career caregiver interventions caregiving causal model cognitive function coping dementia care dementia risk disability ethnic difference expectation experience falls follow up assessment functional decline longitudinal analysis member mild cognitive impairment neuropsychiatric symptom offspring physical conditioning primary caregiver programs psychological distress psychosocial racial and ethnic racial difference racial diversity recruit satisfaction stressor telehealth therapy design trend

项目摘要

Summary Alzheimer’s disease and related disorders (ADRD) are now frequently diagnosed in its early stages. In addition to the stressors presented by any chronic disease, an older couple’s ability to keep their relationship intact may be undermined by the specific and progressive symptoms of ADRD. Until now, most psychosocial research in dementia has focused either on the person with ADRD or on the caregiver separately. Our study will focus on the relationship between them. We will recruit a culturally and racially diverse sample of older adult couples [300 couples (600 individuals)], the members of which will range from cognitively normal through early dementia at baseline. Follow-ups will occur at 6 month intervals for three years (six assessments) and include both members of the couple through the early stage of ADRD and only the caregivers when participants transition to the middle and late stages. We include cognitively normal couples to serve as a reference group, to enable an understanding of change. Our psychosocial assessment includes measures of cognitive function, activities of daily living and behavior, social support, coping, mental health and self-rated physical health, as well as time to transitions such as residential care placement. The information we obtain will be used to conduct both cross-sectional and longitudinal analyses, develop typologies of relationships, and enable us to investigate the effect of these relationship types on outcomes such as emotional and physical health of both members of the couple, as one member becomes increasingly impaired by ADRD. By following the couples over time, we will be able to track changes in relationship style along with change in cognitive, functional and behavioral status, social support and health outcomes. We will develop tentative typologies and a causal model based on baseline data. The longitudinal study will enable us to corroborate or refine the model and elucidate the relationship styles and changes that are most likely to maintain the well-being of both members of the couple. After the last follow-up assessment, we will conduct focus groups with 32 older couples (64 individuals) to acquire qualitative data about the characteristics of their relationship and how they have changed, from the perspective of both members of the couple. This qualitative data will also permit a closer examination of the interpersonal dynamics through which changes or continuity observed longitudinally may have occurred. In our prior experience, the most powerful mediator of outcome is social support, and we plan to see what role that plays in mental and physical health outcomes in this study as well. We expect to find that as dementia advances, the well spouse will have to modify his or her expectations for support from the ill spouse, and that there will be better outcomes if s/he has more satisfactory emotional support from others, particularly family members. The results of this study will include the development of statistical models, and descriptions of couple typologies that will enable us to design interventions to help couples to adapt successfully and minimize the negative effects of ADRD on their relationship and on health outcomes and care cost.

总结