Among Americans with Alzheimer’s disease or other forms of dementia, an estimated 70 percent are cared for at home by family members and friends. Yet most people with dementia and their caregivers skip certain personal safety and health care measures that can make home care less stressful and allow those with dementia to remain at home longer, a new study found.
The study, from researchers at Johns Hopkins School of Medicine, found that many homes where someone with Alzheimer’s was cared for lacked such simple safety measures as the installation of grab bars in the bathroom, monitoring to prevent wandering and encourage safe driving, having carpets safely tacked down to prevent falls, and keeping guns and potentially dangerous tools locked away.
As a result, falls and serious injury are more likely to ensue, requiring an emergency room visit and hospitalization. The end result may be that someone with dementia must leave the home and be placed 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 at home longer," said Betty S. Black, Ph.D., the study leader and an associate professor of psychiatry and behavioral sciences at Johns Hopkins. "Our study shows that without some intervention, the risks for many can be quite serious." The findings appeared in the Journal of the American Geriatrics Society.
For the study, Dr. Black and her colleagues performed in-home assessments and surveys of 254 elderly men and women, most in their 80s, with Alzheimer’s or other forms of dementia. All were living at home, in the Baltimore area, and most had mild to moderate dementia. The researchers also interviewed 246 family members and friends who served as non-professional caregivers. They found that among those with dementia and caregivers, almost all lacked one or more safety or health care measures.
In addition to lack of home safety measures, the researchers found that more than half of those with dementia did not have access to senior day care activities or meaningful activities and social visits at home. About a third had not been formally evaluated for dementia by a doctor, so were not getting early treatments. And 60 percent were not getting adequate medical care for an array of medical problems, including dental, vision and hearing assessments.
Other problems included lack of estate planning and legal considerations, which are important early in the course of dementia, as well as inadequate assistance with daily activities like getting dressed and having meals, and poor medication management. Interestingly, those with mild disease were more likely to be receiving inadequate care than those with more advanced disease, in part because some of those with early dementia were not aware that they had the disease and were not being closely monitored, the researchers said.
Caregivers, too, were not getting their needs met. Many did not have access to resources and other support networks that can provide additional assitance. Many were not educated about how to best care for a loved one with dementia. This lack of support only increases caregiver stress, which may make it harder to keep providing ongoing home care and speed the move to a nursing home.
Dr. Black noted that Medicare and other health programs often do not provide funding for caregiver education and assitance. "If they did," she said, "it may be far more cost-effective than long-term nursing home care."
The researchers also found that depression was a common problem in both those with dementia and caregivers, and that mental health needs often went unmet. Identifying and treating depression in both those with dementia and those who care for them may allow for better and more comprehensive overall care and safety, the authors said.
Source: Betty S. Black, Deirdre Johnston, Peter V. Rabins, Ann Morrison, Constantine Lyketsos and Quincy M. Samus: “Unmet Needs of Community-Residing Persons with Dementia and Their Informal Caregivers: Findings from the Maximizing Independence at Home Study.” Journal of the American Geriatrics Society, Dec. 2013, pages 2087-2095.