A new study has found that most people with dementia who live at home are not having all their health and welfare needs met, which could jeopardize their ability to remain in their homes as long as possible.
Researchers from John Hopkins University School of Medicine say routine assessments of needs and basic medical and supportive services, coupled with simple fixes in the areas of safety — such as grab bars in the bathroom, carpets tacked down to prevent falls, and guns locked away — 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 at home longer,” said Betty Black, Ph.D., an associate professor of psychiatry and behavioral sciences at the university.
“But our study shows that without some intervention, the risks for many can be quite serious.”
Black noted that paying for needs assessments and putting into place preventive safety measures isn’t always feasible, adding that programs like Medicare don’t typically cover them.
“If they did, it may be far more cost-effective than long-term nursing home care,” she said.
Previous research has shown that greater unmet needs among people with dementia are predictive of nursing home placement and death. Caregiver stress also foretells nursing home admission for people with dementia, according to researchers.
The new study, published in the Journal of the American Geriatrics Society, also finds most caregivers have multiple unmet needs, including lack of access to resources and referrals to support services and education about how to best care for their loved one.
An estimated 5.4 million people in the United States have Alzheimer’s disease and other types of dementia. About 70 percent — those who have mild to moderate dementia — are cared for by family members and friends.
For the study, Black and her colleagues performed in-home assessments and surveys of 254 people with dementia living at home in Baltimore. They also interviewed 246 of their informal, non-professional caregivers.
They found that 99 percent of people with dementia and 97 percent of their caregivers had one or more unmet needs. A full 90 percent were safety-related.
More than half of the patients had inadequate meaningful daily activities at a senior center or at home, and one-third still needed a dementia evaluation or diagnosis, the researchers reported.
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, Black explained.
More than 60 percent of people with dementia in the study needed medical care, both for conditions related to their dementia, as well as those not related. This is a problem, considering that those with dementia are more likely to have other serious illnesses for which they may eventually be hospitalized, Black said.
“This high rate of unmet medical care need raises the possibility that earlier care could prevent hospitalizations, improve quality of life and lower the costs of care at the same time,” she said.
She noted that, interestingly, unmet needs were significantly greater in those with higher cognitive function, most likely because many of them did not realize they had dementia and were not yet being closely cared for or monitored.
The researchers also found that African-Americans, those with lower incomes, those who were more independent in their basic daily living activities, such as being able to feed and clothe themselves, and those with more symptoms of depression had higher levels of unmet needs.
Caregivers with less education and more symptoms of depression also had significantly more unmet needs, according to the researchers.
This suggests that identifying and treating depression in people with dementia and their caregivers may enable them to address their other unmet needs, the researchers concluded.
This article first appeared on ‘Psych Central’ on 21 December 2013.