Philip D Sloane1,2, Christopher H Schifeling2, Anna S Beeber2,3, Kimberly T Ward2, David Reed2, Lisa P Gwyther4, Bobbi Matchar4, Sheryl Zimmerman2,5. 1. Department of Family Medicine, School of Medicine, Denver, Colorado. 2. Department of Medicine, University of Colorado School of Medicine, Denver, Colorado. 3. School of Nursing, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina. 4. Duke Family Support Program, Duke University, Durham, North Carolina. 5. School of Social Work, University of North Carolina at Chapel Hill, Chapel Hill, North Carolina.
Abstract
OBJECTIVES: To understand the range of symptoms that present to family caregivers of community-dwelling persons with Alzheimer's disease and related dementias (ADRD). DESIGN: Six-month longitudinal prospective study to identify the incidence of new or worsening symptoms and their association with acute care medical service use. SETTING: Community-based sample of volunteers from multiple states. PARTICIPANTS: A total of 136 patient-caregiver dyads with a range of dementia severity. MEASUREMENTS: Forty four symptoms and signs common in older persons and/or persons with dementia; frequency of emergency department visits, hospitalizations, and death; and associations between reported symptoms and acute medical care. RESULTS: During a mean of 5.7 months' follow-up, new or worsening organ-specific (90% of participants), nonspecific (89%), and behavioral (88%) symptoms were common, with the average caregiver reporting seven new or worsening symptoms. Most common were worsening confusion (74%), decreased activity (64%), agitation (57%), hallucinations/delusions (45%), voice and speaking problems (45%), not eating or drinking (44%), and stress/anxiety (41%). Hospitalization and emergency department use occurred respectively in 19% and 20% of participants, and were associated with organ-specific symptoms (OR 3.15, P = .02), less so with nonspecific symptoms (OR 2.27, P = .07), and very little with behavioral symptoms (OR 1.44, P = .38). Within each symptom category, certain symptoms were significantly associated with acute medical service use. CONCLUSION: Family caregivers of persons with ADRD must respond to a variety of medical, nonspecific, and behavioral symptoms. The high incidence of new or worsening symptoms and of acute medical care use suggests a need to better target symptom evaluation and management in caregiver education.
OBJECTIVES: To understand the range of symptoms that present to family caregivers of community-dwelling persons with Alzheimer's disease and related dementias (ADRD). DESIGN: Six-month longitudinal prospective study to identify the incidence of new or worsening symptoms and their association with acute care medical service use. SETTING: Community-based sample of volunteers from multiple states. PARTICIPANTS: A total of 136 patient-caregiver dyads with a range of dementia severity. MEASUREMENTS: Forty four symptoms and signs common in older persons and/or persons with dementia; frequency of emergency department visits, hospitalizations, and death; and associations between reported symptoms and acute medical care. RESULTS: During a mean of 5.7 months' follow-up, new or worsening organ-specific (90% of participants), nonspecific (89%), and behavioral (88%) symptoms were common, with the average caregiver reporting seven new or worsening symptoms. Most common were worsening confusion (74%), decreased activity (64%), agitation (57%), hallucinations/delusions (45%), voice and speaking problems (45%), not eating or drinking (44%), and stress/anxiety (41%). Hospitalization and emergency department use occurred respectively in 19% and 20% of participants, and were associated with organ-specific symptoms (OR 3.15, P = .02), less so with nonspecific symptoms (OR 2.27, P = .07), and very little with behavioral symptoms (OR 1.44, P = .38). Within each symptom category, certain symptoms were significantly associated with acute medical service use. CONCLUSION: Family caregivers of persons with ADRD must respond to a variety of medical, nonspecific, and behavioral symptoms. The high incidence of new or worsening symptoms and of acute medical care use suggests a need to better target symptom evaluation and management in caregiver education.
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