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Am Fam Physician. 2022;106(1):25-26

This clinical content conforms to AAFP criteria for CME.

Author disclosure: No relevant financial relationships.

Clinical Question

Are palliative care interventions effective in advanced dementia?

Evidence-Based Answer

Advance care planning interventions for people with advanced dementia likely increase the documentation of advance directives (relative risk [RR] = 1.23; 95% CI, 1.07 to 1.41) and the number of discussions about goals of care with family decision-makers (RR = 1.33; 95% CI, 1.11 to 1.59). These may slightly increase concordance with goals of care (RR = 1.39; 95% CI, 1.08 to 1.79). However, there is no effect on perceived symptom management as rated by family and nursing staff.1 (Strength of Recommendation: C, limited-quality, disease-oriented evidence.)

Practice Pointers

Dementia is a debilitating, prevalent, and costly condition affecting more than 55 million people worldwide.2,3 Despite dementia being a leading cause of death in the United States, palliative care interventions have not been widely utilized in the care of people affected by advanced dementia. Palliative care is an inclusive approach that focuses on the patient’s quality of life as well as the caregivers who face problems associated with life-threatening illness.4 The objective of this review is to assess the effectiveness of palliative care interventions in advanced dementia and to update a previous Cochrane review from 2016.5

This Cochrane review included nine studies (published between 2000 and 2020) involving 2,122 participants from the United States, Canada, the United Kingdom, and Europe.1 Of the studies that met inclusion criteria, six were cluster randomized controlled trials (RCTs), two were individually randomized RCTs, and one was a controlled before-and-after study. The authors looked for studies evaluating the impact of palliative care interventions in adults with advanced dementia of any type. Participants were adults with advanced dementia, clinicians, family members, or other paid care staff. Studies were not excluded based on outcomes measured. Findings of palliative care interventions were compared with usual care and reported advance care planning interventions and changes to the organization and delivery of care.

Moderate-certainty evidence (two studies including 384 participants) showed that advance care planning interventions for people with advanced dementia increased the documentation of advance directives (RR = 1.23; 95% CI, 1.07 to 1.41) and the number of discussions regarding goals of care with family decision-makers (RR = 1.33; 95% CI, 1.11 to 1.59). In these studies, advance care planning interventions included education and structured decision aids for surrogates. Low-certainty evidence showed that advance care planning interventions may slightly increase concordance with goals of care (RR = 1.39; 95% CI, 1.08 to 1.79). However, there was no effect on perceived symptom management as rated by family and nursing staff (mean difference [MD] = −1.80; 95% CI, −6.49 to 2.89).

Changes to the organization and delivery of care in the management of severe dementia were evaluated in long-term care facilities and the acute hospital setting. These studies included a wide range of interventions that resulted in low-certainty evidence, and the results of this analysis must be interpreted with caution. Changes to the organization and delivery of care resulted in little to no effect on comfort in dying (MD = 1.49; 95% CI, 0.34 to 2.64), the likelihood of having a palliative care plan in place (RR = 5.84; 95% CI, 1.37 to 25.02), or the use of non-palliative interventions, such as tube feeding, parenteral treatments, and antibiotics (RR = 1.11; 95% CI, 0.71 to 1.72). There was little to no effect on documentation of advance directives (RR = 1.46; 95% CI, 0.50 to 4.25), whether discussions took place about advance care planning (RR = 1.08; 95% CI, 1.00 to 1.18), or participation in discussions about the goals of care (RR = 2.36; 95% CI, 1.00 to 5.54).

The meta-analyses in this review were limited by the risk of bias and the imprecision of effect estimates. The review included only people with advanced dementia, thereby excluding a much larger population of individuals with less severe dementia who may benefit from palliative care interventions earlier in the disease process. This review highlights the limited research that currently guides the use of palliative care in the setting of advanced dementia. It is important to note that, despite these research limitations, the Alzheimer’s Association and the Lewy Body Dementia Association support the use of palliative care interventions in their dementia clinical practice guidelines.6,7 Clinicians are encouraged to find ways to incorporate advance care planning into their care of individuals with dementia. Further research is needed to better understand the impact of palliative care interventions across the spectrum of dementia care.

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