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Older Adults with Dementia Who Live in Communities Have Unmet Needs, as Do Their “Informal” Caregivers

Latest Research

About 70 percent of the 5.4 million older Americans with dementia live in communities, rather than in assisted living facilities or in nursing homes. They are often cared for by “informal caregivers” such as family members, friends, neighbors, and others without formal training in eldercare. 

Family caregivers and other informal caregivers face many challenges finding the services and support that they and the older adults in their care need. These caregivers are often under more stress than others caring for older adults who don’t have dementia. 

Among other things, those caring for older adults with dementia have to manage the older person’s behavior problems, and find and coordinate healthcare visits and other services.  These caregivers often need help juggling many tasks, but few have the help they need. This is a problem because it may result in the caregiver ultimately admitting the older person to a nursing home. 

New Research:

To learn more about the unmet care needs of both older adults with dementia and their informal caregivers, researchers at the Johns Hopkins School of Medicine in Baltimore, Maryland recently interviewed 248 informal caregivers. 

These are some of the things the researchers learned about these older adults’ unmet dementia-related care needs:

• Nearly all the patients (99 %) had one or more unmet dementia-related needs for care, services, and support. These included 90% with unmet needs for personal and home safety – for example, in homes where there were fall-risks, such as slippery drop rugs that can cause falls; or in homes where older people could easily wander from home and get lost.
• More than 60 % had unmet needs for medical care. These included unmet needs to see their primary care provider, medical specialists, or dental, vision, or hearing professionals.
• Half had unmet needs for activities that interested and engaged them, either at an adult care center or, senior center, or at home. When older adults are engaged in activities they are less likely to act out and have other behavioral problems. This, in turn, lessens their caregiver’s burdens.
• Although study participants screened positive for dementia or mild cognitive impairment in a rigorous two-step process, almost a third had not been formally diagnosed by their health care provider with dementia or had an evaluation of his or her dementia. An early evaluation is important because it can provide opportunities to start treatments for dementia symptoms, and for patients and families to plan for future care. 

This is what the researchers learned about the informal caregivers’ unmet dementia-related care needs:

• More than 85% of caregivers needed, but didn’t receive, referrals to community resources – such as the Alzheimer’s Association, or caregiver education. These educational programs cover important topics such as: how dementia affects people and their loved ones; the availability of community-based services; and caregiver skills.
• Nearly half of all caregivers had unmet mental health support such as emotional support, or respite care.
• Being non-white or having significant symptoms of depression were associated with unmet needs for both caregivers and older adults with dementia. 

The researchers also found that:

• Patients with lower incomes and caregivers with lower educational levels had more unmet dementia-related needs than those with higher incomes and education levels.
• Depression was more common among both patients and caregivers who had more unmet needs. 

“For all individuals with dementia to live safely and comfortably in the community for as long as possible, it is imperative that their needs for care, services, and support; and those of their caregivers are met,” the researchers write. “This study suggests that dementia-related needs are often unmet and some groups in particular, including African-Americans, people with lower incomes and caregivers with lower education, are at higher risk of unmet needs. They also note “Since symptoms of depression are associated with higher unmet needs in (patients) and caregivers, screening for and treating depression may be a key factor in the process of helping reduce unmet dementia-related needs.” 

This summary is from the full report titled, “Unmet Needs of Community-Residing Persons with Dementia and Their Informal Caregivers: Findings from the MIND at Home Study.” It appears in the December 2013 issue of the Journal of the American Geriatrics Society. The report is authored by Betty S. Black, PhD, Deirdre Johnston, MB, BCh, Peter V. Rabins, MD, MPH,  Ann Morrison, PhD, RN, Constantine Lyketsos, MD, MHS,  and Quincy M. Samus, PhD.