Depression worsens over time for caregivers of newly diagnosed dementia patients

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Caring for a partner or spouse with a new diagnosis of Alzheimer’s or related dementia is associated with a 30% increase in depressive symptoms, compared to older adults who don’t have a spouse with dementia – and these symptoms are sustained over time, a University of Michigan study found. This sustained depression over time is important because partners are often caregivers for many years, said Melissa Harris, a doctoral student in the U-M School of Nursing and the study’s lead author.

Research suggests that depression can spike after a traumatic event – cancer diagnosis, accident, death, etc – but that most people often return to their previous emotional health. That didn’t happen with the dementia caregivers.

Harris and U-M nursing professors Geoffrey Hoffman and Marita Titler analysed Health and Retirement Study data from 16,650 older adults – those without a partner diagnosis of dementia, those with a partner whose diagnosis was within the past two years and those with a partner whose diagnosis was older than two years.

The U-M study differs from previous studies in a couple of important ways, Harris says. She and her colleagues looked at depressive symptoms over time (rather than a snapshot in time) and at the number of reported depressive symptoms, as opposed to only diagnoses of major depression – a threshold that’s rarely met. Depression can range from severe and persistent to mild and temporary, but even the latter can significantly reduce quality of life.

The average number of depressive symptoms reported by older adults with partners without dementia was 1.2. People whose partners were diagnosed within the last two years reported an additional .31 symptoms (27% increase) and those with partners diagnosed more than two years ago reported an additional .38 symptoms (33% increase). Researchers adjusted for socio-demographic, health and health behaviour differences in partners.

“This may not seem like a huge increase in depressive symptoms, but think about feeling depressed or feeling restless every day. That can mean a lot in the life of a caregiver,” Harris said.

The increase in symptoms is also important because previous research conducted by Hoffman, assistant professor of nursing and senior author on the current study, found that similar changes in depressive symptoms was associated with a 30% increase of fall risk.

“We know that falls are another common debilitating outcome for this group, so the change in depressive symptoms we saw could also imply changes in a caregiver’s physical and functional health,” Harris said.

“Whether it’s carers protecting family members from injury, as we found in prior work, or a spouse’s dementia status affecting the carer, as we found in this study, we have seen that family members deeply affect each other’s health, so clinical and supportive care must orient more around the needs of the family,” Hoffman said.

The social isolation caused by the pandemic only adds to the caregiver’s burden. “The pandemic is adversely affecting family caregivers because of social isolation, and also because resources have been cancelled or now have limited access,” Harris said. “Many caregivers have said they already felt socially isolated and that the pandemic has just amplified those feelings.”

Most people in the early stages of dementia still live at home and are cared for by unpaid family members, primarily partners and spouses, Harris said.

“It’s so important to ask for advice and support early on,” Harris said. “We saw these increases within two years and they were sustained for two years and beyond. Caregivers should remember that their health is just as important as their partner’s and substantially impacts the health of the person with dementia.

Family members—mainly spouses and partners—are the primary caregivers for individuals with Alzheimer’s disease and related dementias (ADRDs), chronic progressive illnesses requiring increasing levels of care. We performed a retrospective observational analysis comparing depressive symptoms of 16,650 older individuals with partners without ADRDs, and those recently (within 2 years) or less recently diagnosed (≥2 years prior), controlling for lagged sociodemographic and health characteristics. The mean number of reported depressive symptoms was 1.2 (SD = 1.8). Compared with respondents with partners with no ADRD, having a partner with any ADRD was associated with a 0.35 increase (95% confidence interval [CI] = [0.30, 0.41]), or 30% increase, in depressive symptoms. A less recent partner diagnosis was associated with a 33% increase, while a recent diagnosis was associated with a 27% increase. Clinically meaningful and longitudinally worsening depressive symptoms amplify the need to prioritize partner health and family-centred care following an ADRD diagnosis.

Melissa L Harris, Marita G Titler, Geoffrey J Hoffman


University of Michigan material


Journal of Applied Gerontology

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