Indian Tradition of Family Care Can Delay Diagnosis, Help for Caregivers

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WASHINGTON, DC—Risks for dementia are on the rise among American Indian and Alaska Natives (AI/AN), but cultural traditions sometimes have led to delayed diagnosis and, therefore, inadequate help for family caregivers, according to Indian Health Service (IHS) experts.

“I think historically there has been a little bit of reluctance to diagnose when one felt there wasn’t anything to do about it, there wasn’t a specific treatment for it. Even though there are medications for dementia, they are not dramatic and don’t offer a huge amount of help,” said Bruce Finke, MD, IHS and the Nashville Area Elder Health Consultant.

AI/AN communities have a strong tradition of caring for their elders—those who are well and those who also have conditions like dementia, according to Finke. “It would be impossible to understate the importance of family caregivers in caring for people with dementia,” he said. “At the very basic level those are the people who are doing most of the care.”

A 2008 study, Challenges to the recognition and assessment of Alzheimer’s disease in American Indians of the southwestern United States, underscored Finke’s comments. It suggested that the belief that care giving is a family responsibility may have prevented American Indian caregivers from bringing a family member’s cognitive problems to the attention of a health provider.

Numerous studies have documented the difficulty of family care giving and how much of a toll it takes on those who are performing it. The CDC reports that family care giving has been associated with increased levels of depression and anxiety, among other health problems. In 2008, the Alzheimer’s Association estimated that, in the United States, an estimated 9.9 million caregivers provided 8.5 billion hours of care at a value of $94 billion dollars for Alzheimer’s disease alone.

Linking Caregivers to Help

While Finke said that it is hard to know the true prevalence of dementia in AI/AN communities, it is clear that risk factors for dementia are increasing in those communities, particularly diabetes and heart disease.

Because dementia often was not diagnosed, many elders with dementia and their caregivers historically struggled without much outside support, he said, adding, “There is increasing awareness in the communities and among providers about the importance of recognizing and diagnosing dementia.”

Linking Families to Care

Essential to getting more support to caregivers is the understanding that official health care programs cannot do it alone, according to Finke. “The perspective here is that it would be a mistake to look to health programs alone to do this, and it would be a mistake if at health programs we think we are the only ones doing this, or we can do this in a silo,” he said. “The way we need to support family caregivers is through a coordinated program with community and tribally-based services.”

Title VI of the Older Americans Act provides grants for the delivery of home and community-based supportive services for older Americans as well as caregiver support. Finke noted that primary care providers play an important role in connecting patients and their caregivers to those types of resources and that the IHS has been working on strengthening its primary care through its Improving Patient Care Initiative, beginning in 2006. IHS is also participating in a VA workgroup on dementia to learn more from that agency’s experience in approaches to dementia screening, diagnosis and management.

“IHS was invited in to participate in a dementia workgroup really as a way to learn from the experience of the VA,” he said. “They have a pretty extensive geriatric program. We have been working with them on that workgroup and learning from their experience and their work.”

In terms of providers, new tools being built into the IHS EHR will allow for the standardized documentation of the screening and diagnosis for dementia, Finke said.

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