New Scientific Focus on Caregiving, Behavioral Research Leads to Better Care

Alzheimer's Association
Wednesday, 5 February 1997

A leading expert on the psychosocial aspects of Alzheimer's disease today warned that families struggling to care for relatives with Alzheimer's disease need far more information or support than is available to them. However, Lisa Gwyther, M.S.W., director of Duke University's Family Support Program, at the Duke University Center for Aging, said an increase in scientifically rigorous studies of services for people with Alzheimer's and their caregivers should lead to improvements in the situation.

Gwyther said that families often hesitate to ask for help, "because they don't think that anyone can provide it as well as they do, because they are embarrassed by their sick family member's unpredictability around strangers, or because of the expenses involved."

Gwyther made her comments to journalists attending a science writers' symposium sponsored by the Alzheimer's Association Ronald and Nancy Reagan Research Institute (RRI), and underwritten by an educational grant from Bayer Corporation, Pharmaceutical Division, West Haven, Conn. She said that it is impossible to categorize or make generalizations about family members caring for the four million persons suffering from the fatal neurodegenerative disease.

"The one thing we really want to get across," she said, "is that when you've met one, you've met one: Alzheimer's families are really different from each other, and Alzheimer's is different from dealing with other chronic and fatal illnesses."

Knight Steel, M.D., geriatrician and director of the Homecare Institute at Hackensack University Medical Center, in Hackensack, N.J., told the science writers that if the needs of the burgeoning elderly population are going to be met, patients are going to need more complete psychosocial and medical evaluations than they are receiving now.

Steel is a fellow of Inter-RAI, a non-profit corporation dedicated to research into issues around long-term care. This organization has fellows in more than a dozen countries around the globe who are designing research tools, and collecting and analyzing data on an international basis, all with the intent of improving the care of all persons as they age.

According to Gwyther, family care research is becoming both more rigorous and more focused. Among the major studies now underway, she said, is one aimed at developing quality of life outcome measures for Alzheimer's patients. The study, funded by the Alzheimer's Association, is developing measures for use with the patients themselves, as well as by their caregivers. "These assessments will give us a way to know whether our interventions are producing meaningful valued outcomes for both people with Alzheimer's and their families," Gwyther said.

She also noted that ongoing studies of assisted living arrangements for the elderly are finding that as many as 30 to 40 percent of the people in non-nursing home residential care suffer from mild-to-moderate dementia, a far higher percentage than expected. The need for specialized residential services for such persons is grossly underestimated.

Gwyther said that before someone has even a chance of successfully caring for a relative with Alzheimer's, there are a number of things they must understand:

When someone with Alzheimer's says or does irrational things, "it's the disease talking, not the person. The caregiver needs to get mad at the disease, not the person." Confrontation and rational arguments don't work.

- "Families need to understand that people with Alzheimer's disease are basically scared and easily overwhelmed. If you live in a world where nothing makes sense, and you don't know what's going to happen next, it can make you very clingy. Change is particularly scary."

- Caregivers are going to need more help over time — living with Alzheimer's implies increasing needs for supervision and real dependency — "and the person with Alzheimer's disease is going to need more help than one person, or one family, can provide.

- "We have to develop strategies to help families that are feasible, user-friendly and generalizable," said Gwyther, who conducts studies of issues related to the provision of care for Alzheimer's patients. "Families should not have to go to medical Meccas to talk to the expert. They need help where they are, timed and close to their most pressing needs and preferences. Somehow we've got to find a way to match what people want or need with what can be made available to them wherever they live."

The Alzheimer's Association Ronald and Nancy Reagan Research Institute was created in 1995 to speed discovery of effective treatments and ways to prevent Alzheimer's disease. To that end, the Institute is forging alliances among universities, government and commercial partners.

For more information, or to contact Alzheimer's Association, see their website at: www.alz.org