Advanced Dementia

Published - Written by Carla Rothaus

Advanced dementia is a leading cause of death in the United States. A new Clinical Practice article covers treatment decisions guided by the goals of care — comfort is usually the primary goal, and tube feeding is not recommended.

In 2014, Alzheimer’s disease affected approximately 5 million persons in the United States, a number that is projected to increase to approximately 14 million by 2050.

Clinical Pearls

What are the features of advanced dementia?

The features of advanced dementia include profound memory deficits (e.g., inability to recognize family members), minimal verbal abilities, inability to ambulate independently, inability to perform any activities of daily living, and urinary and fecal incontinence.

Are there barriers to hospice care in the United States for patients with advanced dementia?

Eligibility guidelines for the Medicare hospice benefit require that patients with dementia have an expected survival of less than 6 months, as assessed by their reaching stage 7c on the Functional Assessment Staging tool (a scale ranging from stage 1 to stage 7f, with stage 7f indicating the most severe dementia) and having had one of six specified complications in the past year. However, these eligibility guidelines do not accurately predict survival. Although hospice enrollment of patients with dementia has increased over past decade, many barriers to accessing hospice care persist, particularly the requirement of having a life expectancy of less than 6 months. Given the challenge of predicting life expectancy among patients with advanced dementia, access to palliative care should be determined on the basis of a desire for comfort care, rather than the prognostic estimates.

Table 1. Hospice Guidelines for Estimating Survival of Less Than 6 Months in a Patient with Dementia.

Morning Report Questions

Q: What are some of the concerns regarding current management of patients with advanced dementia, especially when comfort is the goal of treatment?

A: Infections are very common in patients with advanced dementia. The Study of Pathogen Resistance and Exposure to Antimicrobials in Dementia (SPREAD), which prospectively followed 362 nursing home residents with advanced dementia, showed that in a 12-month period, two thirds were suspected to have infections, most commonly of the urinary or respiratory tract. In SPREAD, 75% of suspected infections were treated with antimicrobials, but less than half of all treated infections and only 19% of treated urinary tract infections met minimal clinical criteria for the initiation of antimicrobials. An estimated 75% of hospitalizations may be medically unnecessary or are discordant with the patients’ preferences and are thus avoidable. The goal of care for most patients is comfort, and hospitalization seldom promotes that goal, except in rare cases, such as in the treatment of hip fractures and when palliative care is unavailable. Daily medications should align with the goals of care, and drugs of questionable benefit should be discontinued. In 2008, an expert panel declared that the use of certain medications is inappropriate (i.e., not clinically beneficial) in patients with advanced dementia for whom comfort is the goal. Cross-sectional analyses of a nationwide pharmacy database showed that 54% of nursing home residents with advanced dementia were prescribed at least one of those medications. Of all the inappropriate medications prescribed, the most common were cholinesterase inhibitors (36%), memantine (25%), and statins (22%). Medications with questionable benefits accounted for 35% of the mean 90-day medication expenditures for the nursing home residents with advanced dementia to whom they were prescribed.

Q: What is the recommended approach to the care of patients with advanced dementia?

A: Advance care planning is a cornerstone of the care of patients with advanced dementia. Providers should educate health care proxies about the disease trajectory (i.e., the final stage of an incurable disease) and expected clinical complications (e.g., eating problems and infections). Providers should also counsel proxies about the basic tenet of surrogate decision making, which is to first consider written or oral advance directives previously expressed by patients and then choose treatment options that align with these advance directives (e.g., a do-not-hospitalize order) before acute problems arise, and ideally, avoid treatments that are inconsistent with the patients’ wishes. In the absence of clear directives, proxies will have to either exercise substituted judgment according to what they think the patient would want or make a decision based on the patient’s best interests. Some observational studies showed that patients with advanced dementia who had advance directives had better palliative care outcomes (e.g., less tube feeding, fewer hospitalizations, and greater enrollment in hospice) than those without advance directives. Treatment decisions for patients with advanced dementia should be guided by the goals of care; providers and patients’ health care proxies must share in the decision making.

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