Living at Home with Dementia

A new research study done at Johns Hopkins suggests that dementia patients that remain at home have multiple unmet health and welfare needs, any of which could jeopardize their ability to live at home for as long as they want to. The researchers say that a number of things related to caregiver needs and patient safety, such as; grab bars in the bathroom, carpets safely tacked down to prevent falls, guns locked away, as well as basic medical and supportive services, could assist with keeping those with dementia out of assisted living or nursing homes.



Study leader Betty S. Black, Ph.D., an associate professor of psychiatry and behavioral sciences at the Johns Hopkins University School of Medicine, said, “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. But our study shows that without some intervention, the risks for many can be quite serious.”



In the past, studies have shown that unmet needs of dementia patients often result in nursing home placement and death. Caregiver stress is also a predicative measure of nursing home placements. The new study, described in the December issue of the Journal of the American Geriatrics Society, finds that along with dementia patients, caregivers also have unmet needs, such as lack of access to resources and referrals to support services and education about how to best care for their loved one. However, putting in safety measures and paying for needs assessment can be costly because programs like Medicare do not cover them. “If they did,” says Black, “it may be far more cost-effective than long-term nursing home care.”



It is estimated that 5.4 million people in the United States have Alzheimer’s disease and other types of dementia, and 70 percent are cared for in the community by family members and friends. For this study, the researchers conducted in-home assessments of 254 people dementia living at home. They also interviewed 246 of their non-professional informal caregivers. They found that 99 percent of people with dementia and 97 percent of their caregivers have at least one unmet needs. Of this, 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.



Unmet needs were categorized as safety, health, meaningful activities, legal issues and estate planning, assistance with activities of daily living, and medication management. Additionally, Black stated that more than 60 percent of people with dementia in the study needed medical care for conditions related or unrelated to their dementia. “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 says.






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