Caring for someone with dementia, a brain disorder involving a decline in memory, thinking, judgment, and learning ability, poses many challenges. These caregivers have to cope with sharp mood swings, communication difficulties, agitation, and possible verbal and physical aggression.
Now imagine caring for a person with dementia and PTSD, which can trigger flashbacks, nightmares, depression, hostility, and self-destructive behavior.
The task may seem unbearable.
A recent VA-funded study published online in The Journal of Nervous and Mental Disease examined the impact of co-existing PTSD and dementia on family caregivers of Veterans. Researchers explored the similarities and differences in psychosocial, health, and service-use outcomes among caregivers of Vets with PTSD and dementia, compared with caregivers of Vets with dementia alone.
The study suggests that caregivers of Vets with PTSD and dementia are at increased risk of negative consequences, compared with dementia-only caregivers. These include a rise in the Veterans' neuropsychiatric behavior problems, more difficulty understanding the Veterans' memory issues, and a personal health strain.
"Given that PTSD is a high priority and prevalent in the VA, and that it increases the risk of dementia, we were interested to see whether it had an effect on caregiving outcomes."
The research also shows that Vets with both disorders used more community services, which may reflect greater unmet needs or difficulties with care, motivating families to seek aid from sources outside VA.
"This conclusion does not take away from the well-established challenges and potential adverse effects of caregiving for veterans with dementia only," the researchers write. "It does suggest that caregivers dealing with both PTSD and dementia may be especially vulnerable."
Nearly three-quarters of the caregivers of Vets with PTSD and dementia were spouses. About a fifth were members of a minority group.
Key subpopulation of Veterans
This is the first known study to consider the impact of co-existing PTSD and dementia on family caregivers, who provide the bulk of care to Veterans with those conditions. To date, most research has focused on the clinical ties between PTSD and dementia. Those with both disorders are a key subpopulation of aging Veterans that appears to be growing as the Vietnam generation gets older.
The study's lead author, Dr. Mark Kunik of the Michael E. DeBakey Veterans Affairs Medical Center in Houston, and other VA researchers have shown in past work that Veterans with PTSD are almost twice as likely as other Vets to develop dementia. A 2010 VA study published in the Archives of General Psychiatry found that veterans with PTSD had a 10.6 percent risk of developing dementia, compared with 6.6 percent for those without PTSD.
Prior research by Kunik and his team has also found that caregivers of Veterans with dementia only are at increased risk for depression, strains in health and relationships, and social isolation. The researchers were curious to know about the impact on caregivers when PTSD is thrown into the mix, he says.
"Given that PTSD is a high priority and prevalent in the VA, and that it increases the risk of dementia, we were interested to see whether it had an effect on caregiving outcomes," Kunik says.
In the study, 38 caregivers of Vets with both PTSD and dementia were compared with 448 caregivers of Vets with dementia only. There were no differences between the two groups in age and race. Veterans and caregivers averaged 80 and 69 years of age, respectively, and 81 percent of the caregivers were white.
Through structured interviews, caregivers rated the level of difficulty they experienced in a series of categories. In cognitive impairment, for example, they specified how much trouble Veterans had keeping track of current events, knowing the day of the week, repeating things, paying attention, and remembering addresses, people, and appointments. Regarding emotional strain, caregivers indicated if they were more irritable or under more stress, bothered by balancing caregiving with other responsibilities, limited in their personal time, or dealing with lower energy levels.
Factoring in the lifetime course of PTSD
Kunik was surprised by two of the study's findings.
"First, caregivers of Veterans with PTSD and dementia reported receiving more community and in-home services supporting their increased needs for resources," he says. "For sure, you'd expect that they need those services. But often when caregivers are so stressed, they don't obtain what they need.
"Second, although this group had more strain and was more likely to include Veterans with behavioral problems, the levels of depression were similar in both groups [of caregivers]," he adds.
Kunik could not pinpoint why the depression levels were similar. He said it may be that caregivers of Vets in both groups have chronic low-to-moderate symptom levels related to depression and strain, but that those levels fail to reach the threshold of a depression diagnosis.
The researchers describe the study as a "formative" step in exploring ties between PTSD and dementia for family caregivers. They say the results suggest more research is warranted with larger, more-representative samples of Vets with both conditions.
One question, in particular, they want to explore further is how the type or severity of PTSD—or its duration—may make a difference in the development of dementia.
"The lifetime course of PTSD may lead to negative effects on caregivers," Kunik notes. "That is, if caregivers had to cope with severe symptoms over a lifetime, they may be more likely to have poorer outcomes when they have the added burden of addressing dementia-related problems."
While researchers know PTSD can impact dementia, "We really do not know if dementia leads to an increase or decrease in PTSD symptoms," Kunik adds.
In addition to VA, Kunik's study was funded by the Alzheimer's Association and the Robert Wood Johnson Foundation.