Declining patient functioning and caregiver burden/health: The Minnesota stroke survey-quality of life after stroke study

Melissa M. Nelson, Maureen A. Smith, Brian C. Martinson, Amy Kind, Russell V. Luepker

Research output: Contribution to journalArticlepeer-review

34 Scopus citations


Purpose: Caregivers of stroke patients may adapt to changes in patient functioning over time. If adaptation occurs, then caregiver burden and health may be influenced more by worsening in patient functioning than by static levels of functioning. This study examines the relationship between patients' baseline and changes in functioning and caregivers' subjective and objective burden as well as their health. Design and Methods: Only stroke patients who had caregivers were included in this analysis (N = 356). Stroke patients (n = 281) or their proxies (n = 75) were interviewed within 4 months of hospital discharge and patients' medical records were abstracted. The primary caregiver also was interviewed at approximately the same time as the patient or proxy (N = 356). In all but one of the 75 proxy cases, the proxy was the patient's caregiver. Binomial and ordinal logistic regression models were used. Results: Declining patient neurological functioning predicted greater objective burden and subjective burden relating to consequen-ces for caregivers' personal lives, but it did not predict caregiver health. Implications: The impact a patient's stroke has on a caregiver's personal life and the number of hours spent caring for the patient appear to be a function of the changes of the patient's status over time rather than a function of a "snapshot" of their functioning at baseline. If these results are confirmed, interventions to protect caregivers may be indicated for stroke patients who continue to decline after hospital discharge.

Original languageEnglish (US)
Pages (from-to)573-583
Number of pages11
Issue number5
StatePublished - Oct 2008

Bibliographical note

Funding Information:
This research was supported by the National Institute of Health under Grant NIH/NINDS R01-NS39028-01A1. M. Nelson was supported by a Grant T32 HS-000036 from the Agency for Healthcare Research and Quality. We gratefully acknowledge the contributions of Alexandra Wright and Jinn-ing Liou and thank them for their help in data preparation. 1Division of Health Policy and Management, University of Minnesota, Minneapolis. Address correspondence to Melissa Nelson, Institute for Health, Health Care Policy and Aging Research, Rutgers, The State University of New Jersey, 30 College Avenue, New Brunswick, NJ 80901. E-mail: mnelson@ 2School of Medicine and Public Health, University of Wisconsin, Madison. 3HealthPartners Research Foundation, Minneapolis, MN. 4William S. Middleton Hospital, United States Department of Veterans Affairs, Madison, WI. 5Department of Medicine—Geriatrics Section, University of Wisconsin, Madison. 6Division of Epidemiology and Community Health, University of Minnesota, Minneapolis.


  • Burden
  • Competence
  • Functional decline
  • Proxies
  • Social exchange


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