Study: Burden of Alzheimer as High in Community Population as in Nursing Home Residents


Statistics indicate possible benefit of home-based palliative care interventions, according to study results from the Indiana University School of Medicine and the Regenstrief Institute.

The symptoms suffered by individuals with advanced Alzheimer disease (AD) and related dementias who live in the community occur at a similar rate to those with dementia in nursing homes, the results of a new study from the Indiana University (IU) School of Medicine and the Regenstrief Institute showed.1

The study is 1 of the first to examine dementia symptom prevalence in the community population.1

“We found that both the rate and types of symptoms suffered by community-dwelling people with dementia were very similar to those in a nursing home setting,” Kurt Kroenke, MD, a professor of medicine at the IU School of Medicine and a research scientist at Regenstrief Institute, said in a statement.1

Investigators took baseline survey data from a 5-year randomized clinical trial, IN-PEACE, which was funded by the National Institute of Aging. They analyzed the responses from caregivers regarding symptoms, including agitation, anxiety, pain, and resistance to care.1

Additionally, investigators attempted to address this issue with palliative care interventions through the trial and are testing a collaborative care model using community health workers and nurses to help manage symptoms while providing caregivers with support.1

“More than 40% of these people were experiencing these symptoms at least weekly. The symptoms are not subtle, they are not infrequent, and they do have a significant impact on the quality of life for patients and caregivers,” Kroenke said.1

“However, they often go unreported in primary-care settings,” he said. “It’s an area that requires more attention during routine care.”1

The participants in the study were also more than 40% Black, which is important because clinical trials often only include 10% or less Black individuals in studies.1

The study, “Prevalence and Predictors of Symptoms in Persons with Advanced Dementia Living in the Community,” was published online in the Journal of Palliative Medicine.1

“These baseline numbers will help us to see if palliative care eases the symptom burden,” Greg Sachs, MD, a professor of medicine at the IU School of Medicine and a research scientist at the Regenstrief Institute, said in the statement. “While we gather data from the clinical trial, this initial information shows the need for providers to make room for symptom discussion in primary care.”1

The CDC estimates that about 5.8 million individuals in the United States have AD or related dementias, with most individuals being aged 65 years or older.2

Additionally, they stated that the Black and Hispanic population in the United States will see the largest increase of these diseases between 2015 and 2060.2


1. New data shows burden of dementia symptoms just as high in community population as nursing home residents. EurekAlert. News release. April 27, 2022. Accessed April 28, 2022.

2. Minorities and women are at greater risk for Alzheimer's disease. CDC. Updated August 20, 2019. Accessed April 28, 2022.,65%20with%20younger%2Donset%20Alzheimer's

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