Jul 27, 2015

Dementia Care and End of Life Issues

Caregivers are often unaware that resources are available to provide comfort, and to help each person afflicted with Alzheimer's to end their life with dignity.


Dementia Care and the end of life
Despite the efforts of researchers, Alzheimer's remains incurable.

Researchers are using all kinds of technology to pinpoint how Alzheimer's progressively robs memories, affects thinking and judgement, and ultimately impedes a person’s ability to perform normal daily activities, and so far their efforts have met with little success.

A person does not die of Alzheimer's disease, but during the course of the disease, the body's defense system weakens, increasing the susceptibility to infection and other causes of death related to aging.


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Families and caregivers of people living with dementia face many challenges as they try and to cope with the steady loss of their loved one's mental, emotional, and psychological skills. As AD progresses to its end stages, certain steps can provide measures of comfort-both to the caregiver and to the person living with dementia.

Hospice and palliative care professionals can help caregivers and families live the last days of life with love and kindness.

Caregivers are often unaware that resources are available to provide comfort, and help each person afflicted with Alzheimer's to end their life with dignity. Caregiver often become confused and face emotional strife and unnecessary guilt near the end.

"A lot of what we think about death and dying is based on the cancer model," says Dr. Stephen Post. "Alzheimer's is a complicated and difficult disease." Late-stage AD is often characterized by the inability to communicate by speech or recognize family members, the inability to move about without assistance, incontinence, loss of appetite, and loss of the ability to swallow, with death usually resulting from aspiration pneumonia, infection, or coronary arrest".

Doctors, nurses, social workers, and health care professionals can help caregivers understand the dying process and the role of palliative care for the AD patient.

The purpose of palliative care is to provide comfort and symptom relief, without the use of aggressive treatments, such as tube feeding, mechanical respiration, dialysis, and cardiopulmonary resuscitation, which often only prolong the suffering of the patient.

Community programs, such as hospice, can be of great service to family members and health care professionals by assisting with medications, patient physical care, and counseling. The objective in managing the advanced stages of Alzheimer's disease should be to maximize comfort while preserving patient dignity and respect.

Experts agree that palliative care and hospice care are the most appropriate courses of action for advanced Alzheimer's patients.


Palliative Care

Use of aggressive medical interventions in the advanced stage of Alzheimer's, such as CPR, feeding tubes, intravenous antibiotics, even dialysis, are considered by experts to be of little benefit to person with Alzheimer's. In fact, they may impose a further burden of suffering on the patient.


Hospice Care

Hospice care is designed to bring the highest quality of life to persons that are living with a serious illness, and are often close to death.

Hospice offers maximum care. They do not offer maximum treatment. If you want or prefer maximum treatment, your love one will most likely be taken to a hospital in an ambulance, be placed in a critical care unit, and be put on a ventilator if necessary. The doctors take over and there you go.

Three signs that hospice care a patient is eligible for Hospice care:
  1. Two or more episodes of pneumonia or other serious infections during the past 6 months,
  2. Difficulty eating and swallowing, even with feeding help, that results in weight loss of 10 percent or more over the preceding 6 months,
  3. One or more skin pressure ulcers that are not healing.
The above are from Gregg Warshaw, former President of the American Geriatric Society.


More on the end of life experience from the NIH

Family Caregiver Alliance
National Hospice Foundation
National Hospice and Palliative Care Organization
Alzheimer's Association

Bob DeMarco

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