Families need help coping with so-called mild cognitive impairment, research shows

February 27, 2008

The age-related memory condition known as mild cognitive impairment is more disruptive of day-to-day life and relationships than once believed, gerontology researchers at Virginia Tech have discovered.

Funded by the Alzheimer's Association, Karen Roberto, director of the Center for Gerontology at Virginia Tech, and Rosemary Blieszner, associate director, set out to determine the issues and needs of families responding to mild cognitive impairment. After interviews with 99 families, the researchers reported, “Primary family members reported that their relatives were experiencing memory-related changes that interfere with their daily activities and responsibilities, decision-making processes, and relationships.”

“For the first three-year study, we interviewed each family member twice,” Roberto said. “The first time was within six months of receiving the diagnosis. For instance, we asked why they went to the memory clinic.”

The research identified three types of responses from people diagnosed with the impairment. “Some elders were strategists; their memory loss was apparent to them and they wanted to find out all they could about what it is, why it is occurring, and what they could do about it. They had already begun working through potential changes in their lives,” the researchers report.

Older adults in the second group appeared more uncertain. They did not appear to recognize that they have memory changes and did not understand why they needed to be tested. And a few older adults appeared troubled by their condition. “They are not accepting of the memory changes. Although they did not acknowledge problems willingly, we sensed that they realize things were not quite right.”

The second interview was a year later to learn how families were coping.

“Care partners reported distress at having to take on the other person’s responsibilities, or at the changes in the marriage or parent-child relationship. There was also frustration at the changes in daily routine,” Roberto said.

“The care partner experiences a loss of independence and a loss of time for personal interests,” said Blieszner. “The definition of [mild cognitive impairment] has been that it does not significantly affect daily life – but sometimes that is not true.”

The finding is significant because problems early in care giving have long-term implications for the individual providing care and their feelings of burden and depression if the impairment progresses to Alzheimer’s disease, the researchers advised the association. “Professionals need to provide information, assistance, coping strategies, and support to family members at this stage in the care process rather than waiting until Alzheimer’s disease is diagnosed.”

The researchers also asked the families the type of information they would like to have. In response, the Center for Gerontology published a brochure for families, “Mild Cognitive Impairment – What do we do now?” Read the brochure. (PDF)

The brochure contains information on how to recognize symptoms and when to seek a professional diagnosis. The researchers emphasize that contrary to common belief, memory loss is not a normal part of aging, which is why diagnosis is important to rule out other conditions, as well as to provide treatment.

Also in the brochure, both family members and professionals offer strategies for compensating for memory loss and advice to the care partner on how to care for oneself. And, the Center for Gerontology brochure suggests how to prepare for the future.

There were 99 economically diverse families in the original study. “A family is three people,” explained Roberto. “One member is 60 or older, with mild cognitive impairment, and able to be interviewed. The second is the primary care partner – as distinguished from care giver. So, this is not a professional care giver but a family member, usually the spouse. The third family member is the secondary care partner and usually not living in the home, such as an adult child, friend, or sibling.”

The second three-year phase of the study began in October 2007. “We continue to follow the families and look at incidence of transition from mild cognitive impairment to Alzheimer's,” Roberto said. “And we are adding 40 families that reflect racial and ethnic diversity.”

For the first study, families were identified in cooperation with the Center for Healthy Aging Clinic of the Carilion Health System in Roanoke, Va., the Eastern Virginia Medical School in Norfolk, Va., and the Memory Disorders Clinic at the Veteran’s Administration Medical Center in Salem, Va. For phase two, the University of Chicago Medical School has joined the study.

There is a difference between forgetfulness and memory loss, Roberto said. “Forgetfulness is often situational or a result of not giving attention to the information presented such as a person's name or directions. It can also be caused by information overload, such as sorting through too many e-mails. Memory loss starts presenting itself more consistently and often includes episodes of confusion or lack of awareness.”

Source: Virginia Tech

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