New or Worsening Symptoms and Signs in Community‐Dwelling Persons with Dementia: Incidence and Relation to Use of Acute Medical Services

• Published in: Journal of the American Geriatrics Society (JAGS) 2017-04, Vol.65 (4), p.808-814
• Main Authors: Sloane, Philip D., Schifeling, Christopher H., Beeber, Anna S., Ward, Kimberly T., Reed, David, Gwyther, Lisa P., Matchar, Bobbi, Zimmerman, Sheryl
• Format: Article
• Language: English
• Subjects: Acute Disease; Aged; Alzheimer's disease; Caregivers; community dwelling; comorbidity; Dementia; Dementia - complications; Female; Humans; Incidence; Independent Living; Longitudinal Studies; Male; Patient Acceptance of Health Care; Prospective Studies; symptoms
• ISSN: 0002-8614; 1532-5415
• DOI: 10.1111/jgs.14672

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.