End-Stage Alzheimer’s – the Long Goodbye
The final stage of Alzheimer’s disease is often called “the long goodbye,” and it can be one of the most difficult stages for the patient’s family and caregivers. Multiple medical and ethical issues arise during this time. The focus of the patient’s primary care physician often shifts from treating the disease to preventing and alleviating unnecessary pain and suffering for the patient and family.
End-stage Alzheimer’s disease is marked by progressive loss of motor abilities that can cause increasing difficulty with speech and communication. Patients might be unable to recognize close family members, and may need greater assistance with walking and transferring from bed. Often, patients are unable to chew or swallow and can become incontinent of bowel and bladder. This can be a time of great emotional turmoil and grief as the decision-making burden is transferred from patients to their families and loved ones.
Careful planning and open communication between physicians and caregivers will provide patients with comfort and dignity during the final stages of the battle.
Hospice Care
In the past, hospice care was identified as care for terminally ill cancer patients. However, the principles of hospice, to provide comfort and reassurance to dying patients and support for families during a time of grief and bereavement, can be applied to all during the final stages of disease. Hospice care can be invaluable whether patients are at home, in an assisted-living residence, or in a nursing home.
In 1982, Medicare created a hospice nursing home benefit when it was recognized that hospice care in nursing homes was not a duplication of end-stage care, but a valuable supplement. There are guidelines regarding when to initiate hospice care and it is important for families and physicians to discuss them. Hospice care guidance during the final stages of Alzheimer’s disease can provide support for both patients and families, and help to preserve the comfort and dignity of your loved ones as they reach the end of their “long goodbye.”
Medical Complications
Alzheimer’s disease may progress from onset of symptoms to end-stage in 8 to 10 years, with a great amount of variability from person to person. Due to the loss of motor abilities and resulting immobility, patients will have greater needs for assistance. If currently living at home, they might need to be placed in an assisted-living residence or nursing home with professional caregivers who specialize in caring for residents with dementia. Families might decide instead to initiate home health care to assist with the care of their loved ones. Problems with swallowing and immobility, in particular, can place patients at risk for medical complications that are often the cause of death in Alzheimer’s patients.
The most common medical complications of Alzheimer’s patients include pneumonia, blood clots, weight loss, malnutrition, and skin and bladder infections. Medical intervention to treat these complications can cause more pain and discomfort. Those with severe dementia might be unable to understand and cooperate with the treatment, so it is essential for families and physicians to weigh the risks and benefits of all medical interventions. The most important aspects of care during this stage are to honor patients’ wishes and to maintain their comfort and dignity.
Advance Directives
Planning for the final stages of Alzheimer’s disease should begin at the time of diagnosis. The diagnosis of dementia often causes fear and anxiety about what will happen in the future, and early planning and a proactive approach helps to alleviate these fears. A better understanding of what to expect as Alzheimer’s disease progresses can help patients and their families make informed decisions regarding care, and ensure that patients’ wishes are understood and honored if and when the time comes that they can no longer participate in the decision-making.
A living will, advance directives and arrangements for a Power of Attorney for Healthcare and Power of Attorney for Finance are extremely important issues to address as early as possible. If you are not familiar with these issues, your local Alzheimer’s Association chapter can refer you to attorneys who specialize in this type of planning and help to guide you through the process.
For more information on this topic, see the HealthLink article Pain Management for Patients With Late-Stage Dementia.
Diana Kerwin, MD
Assistant Professor
Medical College of Wisconsin Department of Medicine
Division of Geriatrics and Gerontology
Helpful reading materials:
- The 36-Hour Day, N. Mace and P. Rabins, Baltimore, MD: Johns Hopkins University Press, 1991.
- Alzheimer’s: A Caregiver’s Guide and Sourcebook. H. Gruetzner, New York: John Wiley & Sons, Inc.
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