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A Caregiver's Story: The Struggle to Link Dementia to Military Service

Navigating the maze of VA benefits is a challenge many veterans and their families face

spinner image belinda edwards with her parents at their home in maryland
Belinda Edwards caring for her parents at their home in Maryland.
Jared Soares

Belinda Edwards needs help. As the sole caregiver for her parents, both of whom have dementia and one of whom is a military veteran, navigating the web of Veterans Affairs (VA) policies in hopes of securing additional benefits for her father is, at best, challenging – especially because she needs to provide evidence his condition is related to his military service.

“Time is my enemy. I don’t have enough time to be, in my opinion, a good daughter. I don’t have enough time to be a good employee,” she said. “I don’t have enough time to work with organizations that are supposedly here to help.”

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Her problem is shared by other caregivers of veterans in the same position. Despite evidence that the effects of Agent Orange, post-traumatic stress disorder (PTSD) and traumatic brain injuries (TBI) can make veterans more likely to develop dementia, the road to obtaining disability benefits for dementia has more obstacles than it does for a veteran dealing with hypertension. 

An estimated 5.5 million military caregivers are subject to VA’s policies to obtain care best suited for their loved one’s needs. That job can be particularly hard for caregivers of those with cognitive disorders, and there are 167,954 veterans in the VA system diagnosed with Alzheimer’s alone.

PACT Act benefits didn’t provide relief to all

The issue was one of the contributing factors to the PACT Act , which was signed into law in August 2022. It broadens VA health care benefits and includes additional presumptive conditions for veterans exposed to burn pits, Agent Orange and other toxins. Although it was hailed as the most significant expansion of benefits and services for veterans in more than 30 years, it doesn’t help everyone.

Edwards’ father, Robert Edwards, 80, is a Vietnam-era Air Force veteran. Before the COVID-19 pandemic, she would take him to the VA for check-ups. But since then, his condition worsened, and he was found ineligible to receive additional care because the VA does not presume dementia to be a condition that stems from military service.

What she says would help her most would be disability benefits — monthly tax-free payments that are made to veterans who have a condition resulting from their duty.

To gain eligibility, Edwards needs to provide evidence that her father’s condition is a result of his time in the military. This can be a lengthy and challenging process that requires gathering and submitting documents including medical and military service records and sometimes additional medical exams. But even after all that information is provided, there is no guarantee a claim will be approved.

However, there is a case for optimism. Part of the PACT Act gives VA the authority to determine if some conditions are presumed to be a result of military service. Within its first year, the PACT Act expanded coverage to certain veterans suffering from sinusitis, asthma and rhinitis, and there may be more to come. ​ ​

“We want to do new presumptions as soon as we possibly can,” said VA secretary Denis McDonough at a July press conference. “We are making sure that we now use that process aggressively.”​​

Can military service cause dementia?

VA researchers have studied and published findings on the association between military service TBI, PTSD and toxic exposures in veteran populations with dementia.

Among the findings:

  • Veterans who were exposed to Agent Orange are nearly twice as likely to develop dementia as those who were not exposed.
  • Veterans with PTSD are more likely to develop dementia than veterans without PTSD.
  • Having a TBI increases the chance of getting dementia, especially Alzheimer’s disease. And for those with both PTSD and TBI, the risk is even higher.​ 
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Still, the VA concludes that there is “no recognized association between military service and dementia,” a spokesperson told AARP. “More work remains to be done to identify additional risk factors.”​ ​

The VA says that it can’t link dementia directly to military service because there isn’t enough information on the role played by genetics and medical and psychiatric influences. Making the case is further complicated by other lifestyle factors that cause dementia, such as hypertension, diabetes, obesity, excessive alcohol consumption, smoking and the inappropriate use of prescription opioids. ​ ​

However, the PACT Act already presumes certain conditions such as high blood pressure to be directly related to military service, even though they can be influenced by lifestyle factors such as smoking and heavy alcohol use. ​ ​

A study from 2021 found that exposure to Agent Orange increases the risk of developing dementia across a large group. But it’s difficult to predict whether one person will develop dementia because they may have other risk factors, said Deborah Barnes, coauthor of the report and professor at the University of California San Francisco. ​ ​

Looking ahead, researchers are investigating how toxic exposure might lead to dementia in the next generation of veterans. But a major challenge exists because it requires studying veterans who were exposed to the pollutants many years ago and are now beginning to develop dementia.​

 “Age is the number one risk factor, and there’s a doubling in the risk every five years after the age of 65. So, for a lot of those kinds of toxic exposures people aren’t old enough yet for us to start seeing dementia,” said Barnes. ​ ​

Researchers are also examining the impact of repetitive head injuries and distinguishing between TBIs with and without loss of consciousness, explained Heather Snyder, VP of medical and scientific relations at the Alzheimer’s Association.​ ​

“There is a need to better understand the type of traumatic brain injury, whether it’s related to something that may happen during service or may happen in another way or due to another incident,” she said. ​​

The U.S. National Academies of Sciences, Engineering, and Medicine (NASEM) reviews the scientific literature to determine if there is enough evidence to link a condition like dementia to military service.​ ​

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“It’s a high-level review, where they bring in experts, scientists, and do a comprehensive literature review and weigh all the research that’s been published since the last review,” said Barnes. “And then they decide, on balance, if they feel like the evidence is strong enough – they presume it’s caused by Agent Orange. In the past they’ve said that there was not sufficient evidence for dementia. But the more studies like the one that we published come out, I think, the more likely they are to make that determination over time.”​​

spinner image belinda edwards closeup on her face
Though being a caregiver is stressful, Belinda Edwards said it’s also a blessing. ‘On both sides of my family, I’m the only one who has both parents,’ she said.
Jared Soares

Obtaining benefits can be difficult

​Edwards has received some benefits from the VA, such as bathroom grab bars, 10 hours a week of in-home care, and medication coverage. She is gathering information on her father’s military service to file a disability claim with the VA. However, his dementia and infrequent discussions about his time in the Air Force have made it difficult. She has a faded and unreadable copy of his military records but is waiting to receive a new copy before working with a veteran service organization (VSO) to submit the claim.​​

“It is a difficult system to navigate through. I think a lot of veterans and their caregivers may not have utilized the VA right upon discharge from the military,” said Christina Irving, the director of client services at the Family Caregiver Alliance. “Somebody who was employed and had insurance through their job – if they did not have a service-connected disability, they may never have applied for VA benefits. And now that the person is maybe 70, 80, 90 years old, they’re having to go through that process of applying, determining eligibility and accessing resources.”​ ​

In terms of obtaining disability benefits, “dementia is usually rated under a 9304 or a neurological condition,” said Scott Hope, deputy national service director for training with Disabled American Veterans (DAV). “Let’s say it’s alcohol-induced dementia. If that’s service-connected, if this happened while on active duty, the dementia itself is a word that is used, but it’s not necessarily a diagnosis.” ​

Edwards cited specific areas where she needs help and believes will continue to create challenges for the health care industry including transportation for those with dementia or cognitive impairments, immediate prescription delivery, affordable care and changes to health care policy the removal of barriers to in-home care for married couples.

​“The health care industry needs to understand that not everybody has a community of help. We do not, plain and simple. They need to get ready for all these only-children that are behind me,” said Edwards. “I’ve greatly appreciated the Alzheimer's Association for being available when I’m up at two o’clock in the morning crying because something woke me up.”​

Depending on a veteran’s needs, the VA told AARP it provides a range of services to those with Alzheimer’s or dementia that may include, “Home Based Primary Care,  Homemaker and Home Health Aide,  Respite Care,  Adult Day Health Care, outpatient clinic, inpatient hospital,  Nursing Home,  Palliative Care, or Hospice Care.  Caregiver Support is also an essential part of these services,” it said.  “If you’re a veteran who’s been diagnosed with dementia or Alzheimer’s disease or are caring for a veteran who has, reach out to your local VA for more information on treatment options.”​ ​

By fiscal year 2026, the VA’s Office of Geriatrics and Extended Care plans to finish the development of programs nationwide to help veterans stay healthy and active at home or in a smaller, home-like setting. These programs include expanding home based primary care, medical foster homes and veteran-directed care programs.​ ​

“Caregiving for me is not a burden; it is a blessing. On both sides of my family, I’m the only one who has both parents,” said Edwards. “Caregivers, I know it’s stressful. I’ve had my days and nights of crying but I want them to know that they’re not alone. Don’t give up asking for help, because for every no there is a yes in some shape or form.”​​

Learn the latest on brain health and wellness from AARP at our Brain Health & Wellness page.

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