Patients with advanced dementia and feeding problems in inpatient and outpatient settings.
Provide information and guidance to be used in decision-making for patients with advanced dementia and eating problems.
The practice of long term tube feeding in advanced dementia patients has roots in past nursing home regulations requiring adequate nutrition and hydration to be provided regardless of patient circumstances. These regulations led to the accelerated trend in the 1980s of using percutaneous endoscopic gastrostomy (PEG) tubes 1,2 to provide nutrition to patients with advanced dementia who were unable to maintain their nutritional needs by independent oral feeding.
Dementia is a degenerative neurological disease characterized by progressive and irreversible cognitive decline leading to subsequent physical decline and death. The leading cause of mortality in advanced dementia patients is dysphagia and resulting pulmonary infection3. Providers should evaluate for causes of poor oral intake (e.g., depression, acute medical illness, poor dentition, ill-fitting dentures, painful swallowing). Patients with advanced dementia may continue to decline in oral intake despite identifying and treating reversible causes. Careful hand feeding should be recommended over any artificial nutrition provided by tubes or IVs. This clinical guideline is supported by the American Geriatric Society, Canadian Geriatric Society and the American Board of Internal Medicine’s Choosing Wisely Campaign and is based on review of the literature as well as expert consensus 2,4,5.
Key points involving artificial nutrition in patients with advanced dementia:
- Tube feeding does not prevent aspiration pneumonia as it does not prevent aspiration of oral secretions or refluxed tube feeding solution. Orally fed patients were found to have less incidence of aspiration than their tube fed counterparts 4. Additionally, tube feeding may produce an increase in saliva leading to more aspiration.
- Artificial nutrition does not prevent weight loss. Patients with advanced dementia who were tube fed still experienced weight loss, depletion of lean body mass and pressure ulcers despite adequate calories and protein intake 5.
- Hunger and thirst are not believed to be primary symptoms during advanced stages of dying. Symptoms of dry mouth, however, may be alleviated with attention to oral care and artificial saliva. Additionally, discussions and confirmation of the patient’s care goals should be revisited and goals of care providing comfort emphasized 6.
- Identify key points in discussion of artificial nutrition with families of advanced dementia patients.
- Describe differences in median survival for patients with and without PEG tube placement.
- Gillick MR. Rethinking the role of tube feeding in patients with advanced dementia. New England Journal of Medicine-Unbound Volume. 2000;342(3):206-210.
- Gillick MR, Volandes AE. The standard of caring: Why do we still use feeding tubes in patients with advanced dementia? Journal of the American Medical Directors Association. 2008;9(5):364-367.
- Mitchell SL, Teno JM, Kiely DK, et al. The clinical course of advanced dementia. New England Journal of Medicine. 2009;361(16):1529-1538.
- Feinberg MJ, Knebl J, Tully J. Prandial aspiration and pneumonia in an elderly population followed over 3 years. Dysphagia. 1996;11(2):104-109.
- Henderson CT, Trumbore LS, Mobarhan S, Benya R, Miles TP. Prolonged tube feeding in long-term care: nutritional status and clinical outcomes. Journal of the American College of Nutrition. 1992;11(3):309-325.
- Rousseau P. Management of symptoms in the actively dying patient. Principles and Practice of Palliative. 2002.
- Wirth R, Dziewas R, Beck AM, et al. Oropharyngeal dysphagia in older persons–from pathophysiology to adequate intervention: a review and summary of an international expert meeting. Clinical interventions in aging. 2016;11:189.
- Meier DE, Ahronheim JC, Morris J, Baskin-Lyons S, Morrison RS. High short-term mortality in hospitalized patients with advanced dementia: lack of benefit of tube feeding. Archives of Internal Medicine. 2001;161(4):594-599.