People With Dementia and Family Caregivers Need More Help

Johns Hopkins Medicine researchers call for increased support and education.

An estimated 5.4 million people in the United States have Alzheimer's disease and other types of dementia, and 70 percent—most with mild to moderate dementia—are cared for in the community by family members and friends.

Most people with dementia who live at home have multiple unmet health and welfare needs, any number of which could jeopardize their ability to remain at home for as long as they desire, says recent research from Johns Hopkins Medicine.

The researchers say routine assessments of patient and caregiver needs, coupled with simple fixes in the areas of safety—grab bars in the bathroom, carpets safely tacked down to prevent falls, guns locked away—and basic medical and supportive services could go a long way toward keeping those with dementia from ending up in a nursing home or assisted living facility.

"Currently, we can't cure their dementia, but we know there are things that, if done systematically, can keep people with dementia home longer," said study leader Betty S. Black, Ph.D., who is an associate professor of psychiatry and behavior sciences at the Johns Hopkins University School of Medicine. "But our study shows that without some intervention, the risks for many can be quite serious."

Previous research showed that when the needs of people with dementia are not met, they are more likely to move to a nursing home. Caregiver stress also makes it more likely. The study, which appeared in the Journal of the American Geriatrics Society, showed that most caregivers also have unmet needs, including a lack of access to resources and support services, and a lack of education about how to best care for their loved one.

Black says that paying for needs assessments and putting preventive safety measures into place aren't always feasible, and Medicare doesn't typically cover them. "If they did," said Black, "it might be far more cost-effective than long-term nursing home care."

For the study, Black and her colleagues performed in-home assessments and surveys of people with dementia and their family caregivers in the Baltimore area. They found that in this group, 99 percent of the people with dementia and 97 percent of the caregivers had one or more unmet needs. Unmet needs fell into many categories, including safety, health, meaningful activities, legal issues and estate planning, assistance with activities of daily living, and medication management.

In addition, the research team discovered that 60 percent of the people with dementia in the study also needed medical care for an unrelated condition. Said Black, "This high rate of unmet medical care raises the possibility that earlier care could prevent hospitalizations, improve quality of life and lower costs of care at the same time."

Source: Johns Hopkins University School of Medicine ( Read the entire study in the Journal of the American Geriatrics Society.

Help at Home

A poll of Caring Right at Home readers showed that more than half are serving as primary caregiver for, or often assist, a person who is living with cognitive impairment. Find more information about resources to support people with Alzheimer's disease and related conditions, as well as their families, in "Alzheimer's Healthcare at Home," which appeared in a previous issue of the Caring Right at Home newsletter.

Right at Home, Inc. is a national organization dedicated to improving the quality of life for those we serve. We fulfill that mission through a dedicated network of locally owned providers of in home care services.