Background/Rationale:
Family caregivers of people with dementia must attend to medical care needs of their relative, yet few available resources address comorbidities in dementia. Consequently, caregivers feel ill-equipped when medical concerns arise. In response, an educational resource – Alzheimer’s Medical Advisor (AlzMed) – was developed in two forms (website and book) and evaluated.
Methods:
Family caregivers (143 website, 51 book) used an educational resource that provides information on medical problems, vital signs, pain, dehydration, and the health care system. Data were collected at baseline, three, and six months regarding confidence in sign/symptom management, burden, depression, and anxiety.
Results:
Caregivers reported significantly improved confidence and (for website users) decreased role strain. Anxiety and depression also decreased, although not significantly. Improved confidence related to a reduction in role strain and anxiety, and care recipients did not experience adverse events.
Conclusion:
An educational resource focusing on care of comorbid illness may benefit caregiver outcomes.
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.
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