Add a heightened risk for depression to the list of challenges facing the caregivers of loved ones who have Alzheimer's disease.
A new study found that older adults caring for spouses newly diagnosed with Alzheimer's had a 30% increase in symptoms of depression compared to those whose spouses didn't have Alzheimer's or related dementia.
And with care often lasting for years and Alzheimer's symptoms continuing to worsen, those caregivers can have sustained depression for a long period of time.
"We know there's a lot of research out there on dementia and how it affects people diagnosed. But there's not a lot of research out there looking at the emotional health of partners," said study author Melissa Harris, a doctoral student at the University of Michigan School of Nursing.
She and her team analyzed data on 16,650 older adults from the University of Michigan Health and Retirement Study. They looked at depressive symptoms over an extended period, rather than for just a snapshot in time, as had been done in previous studies.
They considered individual symptoms, including feeling depressed, alone, sad and or that everything is an effort. Participants also answered whether they had felt happy in the past two weeks and whether they had felt like they enjoyed life.
"The fact that we saw these depressive symptoms stay for at least two years, beyond two years, means they're taking a lot of the burden and it may be impacting the care they're able to provide over time," Harris noted.
In addition to the emotional toll, this sustained depression could lead to physical injury. Past research has shown that a similar change in depressive symptoms was associated with a 30% increase in falls, Harris said, which can be debilitating.
The findings were published recently in the Journal of Applied Gerontology.
In separate research, Harris is interviewing family caregivers to see how their lives have changed because of the COVID-19 pandemic. Many resources and programs for the patient or the caregiver have been canceled or modified to be virtual, she said.
"They don't get the same support and experience that they got before," Harris said. "They described that the pandemic has really impacted their lives and their ability to care for themselves and also their loved ones."
In the United States, more than 16 million family caregivers each provide an average of 22 hours of informal, unpaid care each week, the study reported.
Caregivers of people with Alzheimer's disease experience many challenges, said Dr. Sanford Finkel, clinical professor of psychiatry at the University of Chicago. He is also a member of the Alzheimer's Foundation of America's medical, scientific and memory screening advisory board.
"There is the loss of companionship and the type of love of somebody you've been close to for many years," Finkel said. "It's the loss of who the person is as you've known them through the years."
A person with Alzheimer's disease has significantly diminished ability to nurture over time, while also having more needs, Finkel noted. As the disease progresses, the patient can have behavioral problems, including anger and aggression, as well as physical challenges.
"The demands on the caregiver are huge. Often people who are caregivers are people who are elderly themselves. They may have their own needs, their own emotional needs, their own physical needs, their own needs for intimacy, and so they're getting a lot less coming in and they're having to put out a lot more," Finkel explained.
Getting help early can make a difference for the caregiver's own health, Finkel said. He suggested calling the Alzheimer's Foundation of America's hotline, which is staffed by licensed social workers offering support and a connection to resources.
The Alzheimer's Association also offers a variety of supportive programs, Harris said. This includes a 24/7 helpline.
Caregivers should also ask for help from their health care providers, friends, family and others with knowledge of caregiving, Harris said.
"Our findings have a lot of implications for clinicians," Harris said. "It really demonstrates that we should be prioritizing the entire family."
For more on Alzheimer's disease and how caregivers get support, see the Alzheimer's Association.