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Over 85 percent of care for older adults with Alzheimer’s disease and related disorders is provided by more than 15 million family caregivers. These caregivers typically have no training or support, and may wind up themselves experiencing multiple health risks, including depression.

The National Alzheimer’s Plan Act has identified providing caregiver-supported programs as a national priority. One proposed approach is to supplement existing community-based services for older adults with a caregiver education program.

Johns Hopkins University is currently conducting a study to evaluate the effectiveness of Adult Day Services (ADS) Plus to improve caregiver well-being and reduce symptoms of depression among caregivers.

ADS Plus is comprised of five key components: care management, referral/linkage, education about dementia, counseling/emotional support/stress reduction techniques, and skills to manage behavioral symptoms (e.g., rejection of care, agitation, aggression).

Better for caregivers and patients

In a similar study published in the journal Gerontologist in 2006, researchers found that after three months, ADS Plus participants reported less depression, improved confidence in managing behaviors of their family member, and a greater sense of well-being themselves compared with a control group.

Long-term analyses reported that, compared with control groups, ADS Plus participants continued to report less depression and enhanced confidence.

Researchers also found that study participants who received ADS Plus used adult day services on average 37 days more than participants who did not receive ADS Plus, and that the former had fewer nursing home placements.

Their overall findings were that ADS Plus is cost efficient and easy to implement within adult day centers, and affords important clinical and public health benefits.

How the new study works

Based on challenges identified by family caregivers, an “ADS Plus Prescription” will be provided to caregivers in the Hopkins study, with a written document detailing easy-to-use strategies to address specific care challenges. Caregivers will be trained in how to use these strategies.

Thirty ADS programs throughout the U.S., including Baltimore, will be involved. A total of 300 caregivers will be enrolled throughout June 2020, with a study completion date of June 2021.

Participants will be divided into three groups or “arms” of the study.

Families in the “experimental” arm of the study will receive Adult Day Services (ADS) for their older family member in addition to ADS Plus. The intervention begins with two face-to-face sessions with a staff member who will conduct a needs assessment to identify concerns and needs, and develop an agreed-upon care plan.

The staff member will then meet with caregivers face-to-face at convenient times to implement the care plan. This will occur every other week for the first three months, and then for monthly reassessments for newly emerging care concerns thereafter. Contact occurs about a minimum of 1 hour per month over 12 months.

The “behavioral” arm of the study will provide caregivers with face-to-face or telephone contact for approximately one hour a month for at least 12 months. Targeted education materials concerning clients’ conditions and related matters will be shared via email or traditional mail.

The goal of each contact is to provide ongoing emotional support, situational counseling, education about importance of taking care of self, and referrals/linkages and skills (e.g., stress reduction, behavioral management, how to talk with doctors). The care planning process is collaborative and flexible, reflecting the caregivers’ fluctuating needs.

The third arm of the study will offer no intervention; only ADS care.

When the study is near completion, the control group sites will have the option of receiving training in ADS Plus.

Caregivers 21 years of age or older who provide more than eight hours of caregiving a week may be eligible to participate in the study. For more information, contact Katherine Marx, Ph.D., at (443) 287-8633 or kmarx1@jhu.edu, or Kasey Burke at (443) 287-4595 or kburke32@jhu.edu.