Mallie Odle, 69, keeps a list on the refrigerator in the kitchen of her San Diego home of the things she enjoys doing in her rare spare time.
Recently she checked off lunch with a pal, and she has plans to make a bigger dent on that to-do list, including some exercise classes she hasn’t attended for a while.
A team of Alzheimer’s Disease researchers at the University of California/San Diego’s Department of Psychiatry is hoping for plenty of checkmarks on that list as well, but not because Odle has shown signs of the disease.
It’s Odle’s husband, now 71, who has been diagnosed with Alzheimer’s, and the UCSD department–which has been researching the impact of Alzheimer’s and other dementias on family caregivers for almost three decades–is hoping interventions can help prevent depression and cardiac disease in those caregivers.
“I thought it might help me cope with all of this better,” said Odle explaining why she joined the study a few months ago.
The critical need to help Alzheimer’s caregivers is increasing along with the incidence of the disease. Currently, 5.3 million Americans have Alzheimer’s or related dementia and that number is expected to double in the next ten years, according to the Alzheimer’s Association.
In California, 590,000 people currently have Alzheimer’s disease and that number is expected to grow to 840,000 by 2025.
In San Diego, the number the number is currently 60,000, “more than in some entire states” says Jessica Empeno, director of family services and programs at the Alzheimer’s Association San Diego/Imperial chapter.
Research done through the UC San Diego Alzheimer’s Caregiver Study has linked serious health effects to Alzheimer’s and other dementia caregiving, including:
- Caregivers have stress levels that are four times higher than their non-caregiving peers.
- Caregivers are more than twelve times as likely to experience significant symptoms of depression.
- Caregivers report significantly lower confidence in their ability to cope effectively with life stresses compared to non-caregivers.
- Caregivers appear to have higher rates of hypertension and appear to be at higher risk of developing cardiovascular diseases. (Investigators found that compared to non-caregivers, caregivers have significantly higher blood concentrations of a biological marker believed to reflect the amount of atherosclerosis and vascular damage present in one’s body.)
- Caregivers also appear to have higher blood concentrations of Interleukin-6 (IL-6), which increases coronary heart disease risk.
- The endothelium, which is the inner lining of blood vessels, appears to become less healthy the longer caregivers experience stress, which may lead to cardiovascular illness.
The clinical trial Mallie Odle and dozens of other Californians are enrolled in began a year ago and will run through 2019, funded by the National Institute on Aging, a division of the National Institutes of Health just outside Washington, D.C.
The goal is to evaluate the effectiveness of two educational programs to reduce stress, improve emotional well-being, and reduce risk for cardiovascular disease. The trial is open to caregivers who are 55 or older and provide in-home care for a loved one who has been diagnosed with Alzheimer’s disease or related dementia. Trial participants get up to five in-home health evaluations over the course of two years, including blood tests and an ultrasound scan of their cardiac arteries.
Trial participants are also divided into one of two intervention tracks: six at home sessions with a caseworker to learn how to better care for themselves physically and emotionally, or at home sessions where they get some support and printed information on caring for themselves.
The goal is to zero in on evidence-based practices that can be replicated by trained staff or even trained volunteers to help reduce the psychosocial and physical burden of caring for someone with Alzheimer’s or other forms of dementia.
The UCSD staff sees great promise in the efforts. Decades of research have shown that developing the right coping skills may benefit caregivers both emotionally and physically, says Brent Mausbach, PHD, an associate professor at UC San Diego and the study’s lead investigator.
“Earlier, smaller studies have shown that while increasing levels of stress seemed emotionally harmful in caregivers who felt least capable of coping well, stress had almost no impact on emotional health when caregivers felt confident in their coping skills,” says Mausbach. “More confident caregivers also appeared to have lower blood pressure and lower IL-6 compared to less confident caregivers.”
Mausbach says that research shows that nearly 40 percent of Alzheimer’s Disease family caregivers experience significant symptoms of clinical depression, compared to just five percent of older adults whose spouses are not ill.
“And because Alzheimer’s is a chronic disease, caregivers are in this role for a decade or longer,” he says.
One of the tracks being tested, support and information, is similar to what caregivers might already be getting through supports groups and one-day seminars in order to help them cope a bit better. The second track, the one Mallie Odle is a part of, is more structured and called “behavioral activation.”
“We work with the caregiver to recognize that although they are doing a lot for their loved one they still have to take care of their own well-being,” says Mausbach. Often, he says, as Mallie Odle bears out, “they no longer socialize or engage in activities or hobbies they used to enjoy and we try to reactivate those parts of their lives.”
The study hopes to have 100 participants in each track. and recruiting is ongoing. (Eligible participants receive $500 in addition to the training.) Some participants, like Odle, have already completed the intervention part of the trial and will be followed for a full two years to assess changes–and whether they last. A smaller trial from 2008 to 2013 was successful in reducing depression symptoms in some participants “and gave us the proof of concept to begin the larger trial” says Mausbach.
And while improving the health of the caregivers is a key goal of the trial, there’s a much larger target also in mind.
“Ultimately if the caregiver doesn’t get help, that has implications for the healthcare system and insurers,” says Mausbach. “Now they have a condition that can be costly and if we can prevent that, it’s a positive win from a lot of stakeholders’ perspectives.”
Mausbach says Medicare data shown beneficiaries without Alzheimer’s cost the federal government an average of $2,000 in health costs each year compared to $13,000 for a beneficiary with dementia. Testing and honing the strategies also includes keeping the intervention costs low. “By putting less burden on agencies, we increase the chance they would want to offer the interventions,” says Mausbach.
Agencies in California, including nursing homes and long term care facilities, are showing interest in the concept. The Southern Caregiver Resource Center, based in San Diego, has tested the activation concept with Hispanic caregivers and is gathering data. One idea being considered by some agencies is to provide day care for the family member with Alzheimer’s or dementia during training for the caregiver to ensure that the caregiver will be able to attend the sessions.
Mausbach said another idea to expand the option might be for caregivers to log their activity and emotional condition on line to let providers see how they are doing. Development of the technology is already underway and in testing by several social service agencies in San Diego.
Mausbach says the UCSD team plans to publish interim analyses of factors in caregiving that are detrimental to health, and how to improve them, in the next year or two.
“What we want to know is who among caregivers is the stress most harmful to and how can we help them create coping mechanism to withstand the changes?” Possible outcomes waiting for verification include lower blood pressure readings when caregivers are more active.
Jessica Empeno, of the Alzheimer’s Association is excited about the research being done at UC/San Diego.
“There is a lot of data out there that tells us the impact caring for a loved one has on a caregiver but some of it is a little dated and it’s always good to have the most up to date information,” Empeno says. But she adds that much more important than that are the different interventions the researchers are studying. “Having more evidence based information will help inform the practice of social workers and others in the field,” Empeno says.
However, Empeno says one challenge that will remain even once the UC/SD study concludes is connecting caregivers with the information and resources.
“Most think they are in this alone. They know they’re not sleeping or taking care of themselves, but they stop short of getting assistance, thinking” it’s not that bad, or it’s my duty or , I feel guilty taking care of myself when I should be taking care of my spouse.”
Empeno says many even shy away from the term caregiver and says that too often caregivers put their own barriers in the way.
“Hopefully having data that shows the impact will help, but there will still be some for whom it won’t have the intended effect,” says Empeno.
Late last year the San Diego County Board of Supervisors added urgency and funding in the efforts to help Alzheimer’s patients and their families. Spurred by a conference she attended sponsored by the local Alzheimer’s Association chapter, Supervisor Dianne Jacob championed the Alzheimer’s Project, now passed into law.
The Alzheimer’s Project brings together County and City of San Diego leaders; the County’s Health and Human Services Agency; researchers at UC San Diego, Scripps Research Institute, Sanford-Burnham Medical Research Institute and Salk Institute; Biocom; the San Diego County Medical Society; local law enforcement; the Alzheimer’s Association; caregivers and physicians. Among the components of the plan, which includes research funding, is expanded services and support for caregivers.
“Four out of five Alzheimer’s patients are cared for at home, and 85 percent of care is provided by family members or unpaid caregivers,” says County Supervisor Dave Roberts. “The disease…wears down families…”
But Mallie Odle may be a standard bearer for what research and intervention can do. This fall, based on advice from the UCSD clinical trial team, Odle added a day to her husband’s two day a week adult day care schedule, and now hopes to check even more activities she enjoys off that list on the fridge.