Dementia Patients and Caregivers Living With Unmet Needs

Dementia patients and caregivers report lack of home safety and mental health care

/ Author:  / Reviewed by: Robert Carlson, M.D Beth Bolt, RPh

(RxWiki News) People with dementia who live at home require a significant amount of medical and personal care. Unfortunately, the needs of those patients and their caregivers may often go unmet.

For a recent study, researchers conducted in-home assessments of dementia patients and their caregivers. They found that almost all of the caregivers and care recipients had at least one unmet need.

Most of the dementia patients had an unmet safety need, and the caregivers reported a need for more resources and mental health care.

The authors of this study suggested that unmet needs could be putting both dementia patients and their caregivers at a higher risk for depression.

"Seek out resources and support for in-home dementia care."

Betty Black, PhD, of the Department of Psychiatry and Behavioral Sciences in the Johns Hopkins University School of Medicine, led this study.

The study measured unmet needs among people with dementia and their informal caregivers who live at home.

People with Alzheimer's disease and dementia, or loss of cognitive ability, require extra care and frequently live in nursing homes.

However, many patients with severe dementia live at home with "informal caregivers" like relatives or spouses.

According to Dr. Black and colleagues, people with dementia need significant assistance with daily living, which can put stress on both caregivers and patients.

For this study, these researchers conducted in-home assessments of dementia-related needs among 254 people with dementia and their 246 caregivers.

The assessments were used to gather information on medical histories, medication and physical health problems for the person with dementia.

These researchers also collected information on caregivers' health and wellbeing.

During the in-home assessment, the researchers also looked at the dementia patient's home.

Based on the assessment, the researchers identified any unmet needs based on the Johns Hopkins Dementia Care Needs Assessment, which takes into account needs like safety, medical care, meaningful activities, medication management and more.

The researchers found that 99 percent of the patients with dementia had one or more unmet needs, and 42 percent had eight or more unmet needs.

The most common unmet need was "safety," which meant that the patient was possibly at risk for a fall, wandering from their home or another safety issue.

General health and medical care and meaningful activities were also commonly unmet needs.

The people with the highest number of unmet needs were more likely to be nonwhite with lower education and income levels.

The researchers also discovered that 97 percent of the caregivers had one or more unmet needs. One third had more than five unmet needs.

The most common unmet needs among caregivers were for resource referrals, caregiver education and mental health care.

A total of 22 percent of the caregivers rated their own health as fair or poor.

Additionally, caregivers with lower income and lower education levels were more likely to have unmet needs.

The researchers noted that depression symptoms were tied to more unmet needs in both caregivers and people with dementia.

The authors of this study concluded that the needs of people with dementia who live at home and their caregivers were often unmet.

They suggested that meeting dementia care needs could contribute to safer, more comfortable lives for dementia patients and their caregivers.

This study was published in the Journal of the American Geriatrics Society in the December volume.

The research was funded by various nonprofits, pharmaceutical agencies and family foundations. The authors of the study disclosed some financial ties to those organizations.

Review Date: 
December 27, 2013
Last Updated:
December 27, 2013