Alzheimer’s Disease is a chronic, progressive, ultimately terminal illness. The time course is generally around 6-10 years from diagnosis to death, but can vary from 3-20 years. Of course, patients may die of other causes or comorbid illnesses during the progression of their dementia. Common causes of death directly related to Alzheimer’s disease are aspiration pneumonia and hypovolemic shock related to cessation of eating and drinking. Alzheimer’s patients may also develop and die from other infections, including UTIs, community- or facility-acquired pneumonias, and infected pressure ulcers. They may also suffer strokes, myocardial infarction, arrhythmias, pulmonary emboli, and other common geriatric conditions.
Advance care planning is very important for patients with Alzheimer’s, and should be undertaken as early as possible after diagnosis—although it is prudent not to bring up that topic simultaneously with sharing the initial diagnosis. Patients who have already formulated advance health care directives (AHCDs) may want to update them, and those who have not completed an AHCD—and who still have decision-making capacity, as with most patients with early Alzheimer’s—should be strongly encouraged to execute such a document immediately. While POLST forms are generally recommended for those in the last year or two of life, patients with early dementia who definitely do not want aggressive interventions like CPR, intubation, defibrillation or enteral feeding tubes may wish to complete these, and their physicians should assist in this process.
It is important to note that CPR is rarely successful in the frail elderly, and that there is good evidence that feeding tubes are an inappropriate intervention in advanced dementia patients. In spite of that, the 2016 Dartmouth Atlas reported that in San Diego County, we are worse than the national average with respect to placing these tubes inappropriately. References to studies can be found via the Choosing Wisely website (AMDA, AAHPM and AGS items at http://www.choosingwisely.org/ s=feeding+tube), and a useful patient education pamphlet is available in multiple languages through the Coalition for Compassionate Care of California (http://coalitionccc.org/toolsresources/decision-guides/). In addition to the risks of aspiration pneumonia and complications directly related to the tube (such as intra-abdominal abscesses), feeding tubes are associated with higher rates of delirium and pressure ulcers, and have not been demonstrated to prolong life. It is worth discussing tube feeding early on and actively discouraging consideration of a feeding tube in an advanced Alzheimer’s patient—despite family concerns about “starvation” and the tendency to associate “food” (nutrition) with nurturing and love. Like all advance care planning discussions, these conversations can be deferred to palliative care specialists, but are meaningful and usually well accepted and appreciated when undertaken by the primary care physician who knows the patient and family best. Thickened liquids and pureed diets, while frequently ordered when dysphagia develops in dementia patient, may not always be appropriate as far as quality of life—risk of aspiration notwithstanding. Consider a palliative medicine referral if there are concerns about these issues.
Another important point to educate patients and families on is the notion of dying from dehydration. At the end of life, patients with dementia and most other illnesses lose interest in food and fluids. It is part of a natural dying process, and dying from dehydration—while it has an unpleasant reputation in the public eye—is actually one of the more benign ways to die. In fact, often no medication for symptom relief (such as opioids or benzodiazepines) is necessary; simple measures like moistening the inside of the mouth often suffice. Once all intake ceases, patients generally die in 7-14 days; these patients are usually on hospice. Reassuring patients and families that this process is natural and appears to be painless can be very helpful and appreciated.
Poor prognostic indicators for Alzheimer’s patients—and a time that may signal appropriateness for a hospice referral—include significant weight loss (e.g., 10% in 6 months), significant (stage 3-4) pressure ulcer development, dysphagia, recurrent upper UTIs or lower respiratory tract infections, marked functional decline (e.g., becoming bedbound), and becoming nonverbal. But hospice can be consulted early; if hospice feels that the patient has more than a six-month life expectancy, they may defer admission but still provide some palliative care guidance.
Finally, the geriatric mantra of de-prescribing should be initiated early and continued diligently. There is little reason for a patient with moderate or severe dementia to be on a statin drug. Anticholinergics (including common drugs for overactive bladder) promote delirium. Sedatives and antidepressants increase the risk of falls. Running a seated blood pressure of 160/90 is probably safer than 110/60. Consider stopping all non-essential drugs, especially those that require many years to show benefit. Antipsychotics are dangerous and should be used as a last resort for extreme behavioral or psychotic symptoms (such as frightening hallucinations). Benzodiazepines tend to disinhibit behavior, sometimes exaggerating rather than alleviating anxiety or agitation. They should be avoided whenever possible. As to cholinesterase inhibitors and memantine, they have their own side effects (especially nausea, anorexia and bradycardia for the cholinesterase inhibitors) and are certainly not hugely effective in treating dementia in most patients. Patients with advanced AD becomes severe, and when the patient is already institutionalized, strong consideration should be given to discontinuing these drugs.
Download The Alzheimer’s Project. Physician Guidelines for Screening, Evaluation, and Disease Management of Alzheimer’s Disease and Related Dementias.