Reagan Family Shares Similarities with Typical Alzheimer’s Caregivers, Says UA Researcher

TUSCALOOSA, Ala. – In some ways, including their expressions of relief that their loved one’s suffering has ended, President Ronald Reagan’s family members are typical of what other Alzheimer’s caregivers experience, but a University of Alabama psychologist who is studying such caregivers in their homes says there are also differences.

“In cases like this, there’s a sense of sadness for families, obviously, but there’s also a sense of relief,” said Dr. Louis Burgio, director of UA’s Applied Gerontology Program and co-director of its Center for Mental Health and Aging. “When someone is in the final stage of Alzheimer’s disease, as in President Reagan’s situation – where they have lost all vestiges of their former personality – it’s as if the family had already lost them.”

Burgio is the principal investigator of a project, funded by the National Institute on Aging and the National Institute of Nursing Research, designed to improve the well being of the Alzheimer’s caregiver while increasing his or her knowledge and skills in dealing with the patient. Under Resources for Enhancing Alzheimer’s Caregiver’s Health II, or REACH II, Burgio was earlier awarded $1.2 million to help Alzheimer’s caregivers within their homes.

The grieving process for Alzheimer’s caregivers can be atypical from that of other grieving families, Burgio said.

“It might even look like Nancy Reagan is not grieving. She is grieving, genuine sadness is there, but, in a sense, she lost her husband some years back.”

An official statement released Sunday by a Reagan family spokesperson addressed just such feelings, saying the period is an “extremely sad time” for Nancy, and “there definitely is a sense of relief that he is no longer suffering and has gone to a better place.”

A UA colleague of Burgio’s, Dr. Rebecca Allen, co-authored the first detailed study of caregivers at the end of life using data from the REACH study. The report, which was published in the New England Journal of Medicine in November 2003, indicated home caregivers showed rapid recuperation from depression within three months of the death of their demented relatives and the improvements continued for a year.

Caregiving is so stressful that about 40 percent of Alzheimer’s caregivers die from stress related disorders before the patient, Burgio said.

“Caring for a loved one with Alzheimer’s disease can result in early death for the caregiver, or in making them more ill and causing them more depression,” Burgio said. “Once the patient gets to a certain point, they are almost no longer recognizable as the person they once were. They can no longer recognize their loved ones, they don’t know who they are, and they finally get to a point where they are almost completely mute and bed-bound. You lose the person, but the body is still there.”

In some ways Nancy Reagan’s experience in losing her husband to Alzheimer’s was atypical of what other caregivers face, Burgio said.

“He lived to the upper limits of what people typically do after the diagnosis. That was probably because President Reagan had 24-hour medical care. The vast majority of the individuals who have Alzheimer’s disease are living in the community and are cared for by family members who don’t have the resources to access those kinds of services.”

The disease devastates both the mind and the body, Burgio said.

“The majority of the patients develop behavior disturbances. Their personality changes, they become agitated, they become verbally abusive to their caregivers, they resist care and they can become physically aggressive. They often become paranoid.”

It’s not uncommon, for example, for the patient to wrongly accuse their caregiving spouse of marital infidelity, which is very disturbing for the caregiver, Burgio said. The patient also often becomes incontinent, he said.

“That’s what often triggers nursing home placement,” Burgio said. “Not only is that very difficult to care for, but, emotionally, that becomes very difficult for the loved one to see.”

Burgio, a UA Distinguished Research Professor, is nationally known for his expertise in the areas of geropsychology, caregiving, and interventions for dementia patients, having authored or co-authored more than 125 research publications, book chapters or technical reports in the most prestigious journals in the field.

He is considered a research pioneer in the care of Alzheimer’s patients, their families and professional caregivers, having developed effective protocols for the treatment of caregiver stress and the improvement of nursing home resident quality of life, bettering the lives of countless individuals in Alabama and throughout the nation. Burgio has been the primary project director, co-director or primary mentor for research grants totaling more than $10 million awarded by the nation’s top research centers such as the National Institute on Aging, the National Institute for Mental Health, the National Institutes of Health, and the National Institute of Nursing Research, among others.