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Incidence and Predictors of Advance Care Planning Among Persons With Cognitive Impairment

https://doi.org/10.1097/JGP.0b013e3181faebefGet rights and content

Objective:

Persons with mild cognitive impairment (MCI) and Alzheimer disease (AD) are at heightened risk for future decisional incapacity. We sought to characterize advance care planning (ACP) rates over time in individuals who had no advance directives (living will or durable power of attorney) in place when they initially presented for a cognitive evaluation.

Design:

Retrospective analysis of data that had been prospectively collected.

Setting:

Alzheimer's Disease Research Center memory disorders clinic.

Participants:

Persons (N = 127) with a diagnosis of MCI or early AD (n = 72) or moderate to severe AD (n = 55) and no advance directives upon initial presentation for a cognitive evaluation.

Measurements:

Extraction of responses to items pertaining to ACP assessed during annual semistructured interviews.

Results:

By 5 years of follow-up, 39% of the sample had initiated ACP, with little difference by baseline diagnosis. Younger subjects (younger than 65 years) were significantly more likely to initiate advance directives (43%) than older subjects (37%). This age effect was more pronounced in men than in women as well as in married subjects, those with a family history of dementia, those with no depressive disorder, and subjects with moderate to severe AD (versus those with MCI or early AD) at baseline.

Conclusion:

Only a minority of subjects initiated ACP. The findings suggest the need for interventions aimed at enhancing ACP completion rates, particularly among older adults with cognitive impairment, since these individuals may have a time-limited opportunity to plan for future medical, financial, and other major life decisions.

Section snippets

Setting

Adults presenting to the University of Pittsburgh Alzheimer's Disease Research Center (ADRC) with complaints of memory or other cognitive impairment consent to and undergo standardized clinical research evaluations consisting of a medical and neurologic history and examination, brain imaging, psychosocial assessment, psychiatric interview, and neuropsychological testing. All ADRC participants have an informant (e.g., spouse, child, sibling, or friend) who has frequent interaction with them and

Baseline Sample Characteristics

As shown in Table 1, most of the subjects were 65 years or older, married, and European American. Men and women were almost equally represented. Slightly less than half the sample had a known family history of dementia and nearly a quarter of the sample had a psychiatric diagnosis of MDD at baseline. Subjects with MCI or mild AD were more likely to be female and have an education beyond high school. There were no other baseline differences between the two groups.

Advance Care Planning

The cumulative incidence

DISCUSSION

This is the first study examining prospectively recorded data on advance directive completion rates in persons at high risk for future decisional incapacity. In the large cross-sectional study by Lingler and associates,28 the majority of 661 persons (71%) with MCI or AD had completed advance directives before presenting to the ADRC for an evaluation of their cognitive symptoms. The current sample was limited to those individuals with MCI or AD who presented to the ADRC with no ACP in place and

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    • Advance care planning in neurologic illness

      2022, Handbook of Clinical Neurology
      Citation Excerpt :

      Elements of the ACP conversations that are especially important in the context of dementia include dedicating time and special attention to the trajectory of the illness, cognitive decline, and loss of medical decision-making capacity, with early, continuous involvement by family members and others close to the patient. Early discussions, optimally in mild stages of disease, enhance the decision-making abilities of surrogate decision makers, families, and loved ones, reducing the stress and anxiety related to speaking on behalf of patients (Mitchell et al., 2004; Garand et al., 2011). To this end, ACP exists within a minimal set of principles for standard care as best practice in both dementia care and palliative medicine.

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    This work was supported by National Institutes of Health grants MH070719 and AG05133. Dr. Lingler was supported in part by a Brookdale Foundation Leadership in Aging Fellowship.

    The authors have no disclosures to report.

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