The Delicate Balance of End-of-Life Care

November 13, 2003

November 13, 2003

Caring for someone with Alzheimer’s disease is extremely demanding — and it may become even more so as the end draws near. A study in today’s issue of the New England Journal of Medicine provided some surprising observations about the period involving end-of-life care.

In the study, doctors, counselors and rehabilitation specialists at the c and other medical centers surveyed more than 200 caregivers who cared for a loved one with Alzheimer’s at home. The caregivers were questioned in depth during the year before their loved one passed away. The report underlines the rigorous toll that caring for someone with dementia takes. It also revealed some surprising — and hopeful — findings about overcoming the trials of Alzheimer’s care.

Among the researchers’ findings:

  • Half the caregivers spent at least 46 hours a week assisting with dressing, feeding and other activities of daily living.
  • More than half felt they were “on duty” 24 hours a day and felt that the person with Alzheimer’s was in frequent pain. Many also had to reduce or give up their employment to care for their loved one.
  • Not surprisingly, many caregivers became depressed by the stresses of providing care. Counseling and support services were needed most during the period before the person with Alzheimer’s passed away, the authors found.
  • A large proportion of caregivers also showed remarkable resilience after the death of a loved one. Within three months, many caregivers had fewer symptoms of depression. After a year, depression was markedly less than during the time they acted as caregivers. The more stressful and drawn out the time before the death of the person with Alzheimer’s, the more relieved caregivers felt at the death itself.
  • Almost three-fourths of caregivers reported that the end came as a relief to them. More than 90 percent believed that it was also a relief to the patient.

Caring for a loved one with Alzheimer’s is never easy. www.Alzinfo.org provides a wealth of resources to help you make informed choices in insurance and financial planning, legal matters, and medical and end-of-life care.

By www.ALZinfo.org. Reviewed by Samuel E. Gandy, M.D., Ph.D., Chairman of the Scientific Advisory Board, Fisher Center for Alzheimer’s Research Foundation.


Alzheimer's Articles