Nov. 20, 2006 -- Helping the caregiver of a loved one with dementia can help the patient as well, new research suggests.
Two studies, both published in the Nov. 21 Annals of Internal Medicine, highlight the importance of supporting family members who care for patients with Alzheimer's and other forms of dementia.
But support services are rare, and they are not likely to become the norm unless federal policy makers recognize their value, according to an accompanying editorial.
"Patients with dementia will probably not be forming a lobby anytime soon, and their caregivers are too busy. It is time for the medical profession to advocate on their behalf," write Kenneth E. Covinsky, MD, MPH, and C. Bree Johnston, MD, MPH, of the San Francisco VA Medical Center.
Covinsky and Johnston fault the Medicare system and other providers for failing to recognize the needs of home-based dementia patients and their caregivers, despite the fact that unpaid family and community caregivers save the system billions of dollars each year.
They also cited as another major public health failing Medicare's failure to pay for team-based management – with a team of different professionals with the needed expertise -- for elderly patients with dementia.
"One of the ironies of dementia care is that expensive technological diagnostic procedures are paid for with no questions asked, but almost nothing is spent to support caregivers," Covinsky tells WebMD.
"We spend up the wazoo to diagnose this disease, but once it is diagnosed, patients can't get what they need," he says.
Evaluating Intervention Strategies
One of the new studies is one of the first to really evaluate an intervention strategy designed to improve the lives of dementia patients and their caregivers.
The Resources for Enhancing Alzheimer's Caregiver Health (REACH) II study was funded by the National Institute on Aging and the National Institute on Nursing Research.
The study looked at 642 Hispanic, black, and white caregivers assigned for six months to either a group receiving helpful intervention or one not receiving intervention.
Intervention consisted of nine 90-minute home visits and three telephone calls dealing with stress management, depression, and other aspects of the caregivers' own health, as well as social networking.
Meanwhile, caregivers in the comparison group received a packet of educational materials about dementia, caregiving, community resources, and safety. They also had two brief "check-in" telephone calls during the six-month study.
At the end of the study, caregivers in the intervention group reported better quality of life than those in the comparison group.
Race did not appear to be a factor in the response to intervention. But husbands or wives taking care of a spouse seemed especially likely to benefit from the intervention.
However, the number of patients sent to nursing homes was similar in both groups.
The researchers speculated that longer intervention might be needed to see a difference in this outcome.
The second study comes from researcher Barbara G. Vickrey, MD, MPH, in the department of neurology at UCLA, and colleagues. It was funded by the California Department of Aging, among others.
It looked at 408 home-based patients with dementia and their caregivers.
Just over half of the caregivers were assigned case managers to help them get needed services within both the health care system and the community. The other caregivers received no such help.
Not surprisingly, the patients whose caregivers had case managers ended up receiving more and higher-quality health and social services than those whose caregivers were left to manage with little help.
Scores on standardized tests measuring quality of life were also higher for patients in the case manager group.
The Public's Role
Both studies suggest addressing the needs of caregivers is integral to effective treatment of dementia patients, Covinsky and Johnston conclude.
"Caregivers routinely risk their financial, emotional, and physical well-being to provide care to their relatives or members of their community with dementia," they wrote. "It is time for the public to recognize their part of this social contract."
That means providing psychological and social support services for caregivers like the ones outlined in the two studies, Covinsky says, as well as time off in the form of home nursing care and more elderly day care.
"Something basic like having someone come in to help bathe or dress a patient can make a big difference," he says.