Palliative care is specialized medical care for people with serious illnesses like Alzheimer's disease.
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Palliative care focuses on providing patients with relief from the symptoms and stress of a serious illness. Palliative is a form of end of life care.
The goal of palliative care is to improve the quality of life for patients, caregivers and families.
Unfortunately, while the situation is improving, palliative care needs of patients with dementia are sometimes poorly addressed. Symptoms such as pain are sometimes under treated; and, patients are often subjected to burdensome interventions.
There is a need for national guidelines and policies to address more directly the rights of dementia patients in palliative care settings, and for the delivery of appropriate palliative care to this sub-group of patients.
Experts agree that palliative care and hospice care are the most appropriate courses of action for advanced Alzheimer's patients.
Use of aggressive medical interventions in the advanced stage, such as CPR, feeding tubes, intravenous antibiotics, even dialysis, are considered by experts to be of little benefit, and may impose a further burden of suffering on the patient.
"Family members should never be made to feel guilty in making a decision to allow a person with Alzheimer's or a related dementia to die naturally."
Healthcare professionals should do more than simply present technological options like items on a laundry list, without clarifying the burdens that these technologies create for people with advanced dementia.
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Healthcare teams in dealing with dementia patients should be nonjudgmental, listen attentively to family wishes, and provide accurate facts on the adverse implications of prolonging end-of-life treatments.
Artificial Feeding and Hydration
Family members should be warned about the potential medical problems associated with artificial feeding and hydration.
This includes, in the case of nasograstric tubes, the pain and discomfort related to the forceful introduction of physical devices in the esophagus, needed sedation, and infections often resulting from the procedure.
Most family members are not usually aware that no longer eating and drinking is part of the dying process of Alzheimer's disease and related dementia - and this is normal.
"Our modern culture tends to treat dying as unnatural. Our technology allows us to forestall death, yet cannot prevent it.
Family members need to be informed, with great compassion, sensitivity, and patience, about the dying process and how natural and inevitable it truly is.
The body is shutting down. The natural process of dying means that the body no longer wants or needs food or fluids. This is often viewed as unnatural by caregivers, and even some healthcare professionals.
However, we need to explore our own feelings and attitudes toward death and dying before we can help families through this transitional process, this time of loss and change," comments Darby Morhardt, Northwestern University Feinberg School of Medicine.
- Cessation of food intake results in the release of endorphins, which reduces pain.
- Feeding tubes and hydration block the release of endorphins and can result in weeks of "unnecessary suffering".
- Percutaneous endoscopic gastronomy (PEG) feeding can result in back-up to the esophagus, increasing the risk of aspiration pneumonia.
- Lack of ambulation and artificial feeding often requires physical restraint to prevent patients from pulling out their feeding tubes-increases the risk for bed ulcers and skin infections.
Problems with choking can be addressed by substituting thick liquids, such as yogurt instead of milk, and by using commercial thickeners.
Sources of information: National Library of Medicine, National Institute of Health, and others
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Bob DeMarco is the Founder of the Alzheimer's Reading Room (ARR). Bob is a recognized expert, writer, speaker, and influencer in the Alzheimer's and Dementia Community worldwide. The ARR Knowledge Base contains more than 5,000 articles. Bob lives in Delray Beach, FL.
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