# Understanding the lived experience of couples across the trajectory of dementia

> **NIH NIH R01** · NEW YORK UNIVERSITY SCHOOL OF MEDICINE · 2021 · $56,771

## Abstract

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 ...

## Key facts

- **NIH application ID:** 10270548
- **Project number:** 3R01AG062684-02S1
- **Recipient organization:** NEW YORK UNIVERSITY SCHOOL OF MEDICINE
- **Principal Investigator:** Mary Sherman Mittelman
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $56,771
- **Award type:** 3
- **Project period:** 2019-09-15 → 2024-05-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10270548

## Citation

> US National Institutes of Health, RePORTER application 10270548, Understanding the lived experience of couples across the trajectory of dementia (3R01AG062684-02S1). Retrieved via AI Analytics 2026-05-22 from https://api.ai-analytics.org/grant/nih/10270548. Licensed CC0.

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