Lown Right Care
Reducing Overuse and Underuse
Diagnosing Dementia and Clarifying Goals of Care
Am Fam Physician. 2019 Sep 15;100(6):369-371.
Sally is a 78-year-old retired teacher. She has hypertension and uses insulin to treat her diabetes mellitus. She lives independently with the help of a hired caregiver who visits three days per week to shop for groceries and cook. Her daughter lives nearby and visits two times per day to check Sally's blood glucose level and administer her insulin. Sally's daughter notices that Sally's memory has been worsening recently and joins her at her next primary care appointment. Unfortunately, the doctor brushes aside the memory concerns, attributing them to old age, and instead spends most of the visit managing Sally's diabetes.
In the following days, the caregiver notices Sally is acting strange. At the emergency department, a workup for altered mental status reveals a urinary tract infection with sepsis. Sally is admitted overnight for intravenous antibiotics and becomes increasingly confused and agitated. The overnight resident physician sedates her with intramuscular antipsychotics and applies soft restraints to keep her from getting out of bed. An expected one- to two-night hospitalization turns into a weeklong stay attributed to delirium. At the end of the hospitalization, Sally is deconditioned from being bedbound. She is discharged to a skilled nursing facility for rehabilitation; however, after 30 days, Sally is still having difficulty with activities of daily living and her memory function has worsened significantly.
The average skilled nursing facility costs more than $100,000 per year, and Sally quickly depletes her life savings before qualifying for Medicaid. Similar scenarios are all too common across the United States. Why is it difficult to provide the right care to adults with dementia?
The current fragmentation and failure of dementia care are a problem of framing. Even if dementia is diagnosed correctly,1 it is viewed indiscriminately, as an additional problem on the list, such as hypertension or diabetes. Prescribing acetylcholinesterase inhibitors is often the first and last clinical action physicians perform because of brief clinical encounters and the lack of a disease-modifying treatment.2 In reality, dementia is a life-limiting terminal illness for the patient and a life-altering diagnosis for the patient's family or caregivers. The median survival rate after a diagnosis of dementia is 3.7 years.3 Numerous studies show the value of outpatient care models involving education, counseling, care coordination, and personalized care planning and management.4,5 Even without existing dedicated outpatient care programs, primary care physicians have much to offer patients.6,7 A diagnosis of dementia should be considered the primary problem under which care for all other problems is organized. For example, certain chronic disease monitoring and treatment for long-term clinical benefits might be reconsidered.
Approximately two out of three older adults with dementia will be hospitalized at least once per year.8 Many of these hospitalizations are preventable.9 Prevention is critical because, once hospitalized, individuals with dementia have longer stays, require more care, and more often have complications leading to cognitive and functional decline, most notably delirium.10,11 Individuals with dementia also have higher rates of rehospitalization, institutionalization, and mortality after discharge.12 The high risk of iatrogenic harm when individuals with dementia are hospitalized can be considered a “hospital allergy.”
Outpatient clinicians play a critical role in the management of patients with cognitive impairment and dementia. Brief paper-pencil assessments include the Mini-Cog, Addenbrooke's Cognitive Examination, and the Montreal Cognitive Assessment.13 Case finding for suspected cognitive impairment provides
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Lown Institute Right Care Alliance is a grassroots coalition of clinicians, patients, and community members organizing to make health care institutions accountable to communities and to put patients, not profits, at the heart of health care.
This series is coordinated by Kenny Lin, MD, MPH, Deputy Editor.
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