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

Abstract

Background/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 136 patient-caregiver dyads with a range of dementia severity. Measurements 44 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=0.02), less so with nonspecific symptoms (OR 2.27, P=0.07), and very little with behavioral symptoms (OR 1.44, p=0.38). 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.

Impact of health service interventions on acute hospital use in community-dwelling persons with dementia: A systematic literature review and meta-analysis

“…Second, there might be a gap between the focus of the interventions and the actual causes of acute hospital use [20,70]. The interventions may not have effectively addressed the causes of acute hospital use of community-dwelling persons with dementia [20,70,71]. Only a few types of interventions were tested in the 17 trials, mainly case management and self-management.…”

“…However, care fragmentation was not identified as a major determinant of crises leading to acute hospital use [70,72]. Since behavioural and psychological symptoms of dementia are not leading causes of hospital admissions, increasing self-management skills for patients and caregivers would not have been effective [3,71].…”

Can Sepsis Be Detected in the Nursing Home Prior to the Need for Hospital Transfer?

“…The GCS, which the qSOFA recommends, is not appropriate for the NH setting, both because of its complexity and because it presumes a premorbid normal cognitive status. 26 Change from baseline is more relevant; however, this too is challenging to measure, because fluctuations in cognitive function are common enough in dementia to not be associated overall with acute events, 32 and because subsyndromic delirium may be more relevant in screening for sepsis risk but is quite common and heterogeneous in older persons. 33 Particularly noteworthy was the infrequency in which we found documentation of a visit from a physician, nurse practitioner, or physician assistant during the 72 hours prior to hospital transfer.…”

Dementia‐Capable Healthcare: One Step Closer

“…Avoiding acute care episodes in dementia is easier said than done, especially when patients live at home in the care of their families . For clinicians, dementia care often calls for quick decisions with little information about a patient who has nonspecific signs or symptoms . It is not always clear to the family or the provider whether the patient is sick or just having a bad day, when to initiate any clinical action, and whether appropriate care at home might prevent the need for an ED visit or hospitalization.…”

“…Family caregivers are vital links between the clinician and the patient, translate healthcare into the home, usually with no formal training and often without “knowing what they don't know.” Two different but complementary approaches to individualized clinician‐caregiver collaboration are currently in development. The first teaches the caregiver about the meaning and management of symptoms their care recipient has actually experienced, and the second uses a person‐centered tool to elicit a caregiver's specific coaching needs across the full range of health and psychosocial care domains . Supporting families' gradual metamorphosis into caregiving units for people living with dementia calls for thoughtful balancing of the professional and the personal—and the boundaries between them are often blurred.…”