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What was the research about?

Dementia is a loss in mental ability that interferes with daily life. People with dementia often lose the ability to care for themselves. About one in eight people over 65 have dementia. Unpaid caregivers, such as family members, often take care of people with dementia. Caring for a person with dementia can be hard and, at times, overwhelming.

Dementia is more common among Hispanic people than other groups. Hispanic caregivers also have higher rates of burden, or personal strain, and depression than other caregivers.

The study compared two programs designed to help caregivers:

• The New York University Caregiver Intervention, or NYUCI
• The Resources for Enhancing Alzheimer’s Caregiver Health: Offering Useful Treatments, or REACH OUT

The research team compared how well the two programs helped Hispanic caregivers by

• Reducing the burden that caregivers feel
• Reducing signs of depression among caregivers
• Reducing caregiver stress
• Improving caregivers’ physical function, such as doing routine tasks like carrying groceries or walking for 15 minutes

The research team also wanted to learn if the programs worked better for caregivers who were caring for their spouse than those who were caring for their parent.

What were the results?

After six months, the two programs worked about the same to help caregivers. The caregivers in both programs had less burden and stress than they did at the start of the study. Caregivers’ signs of depression and physical function didn’t change during the study.

In both programs, the reductions in burden and stress were larger for caregivers who were caring for their spouse than for those who were caring for their parent.

Who was in the study?

The study included 221 Hispanic caregivers who lived in New York City and took care of a relative with dementia. About 63 percent of caregivers were caring for their parent, and 32 percent were caring for their spouse. The average age of caregivers was 58, and 83 percent were women.

What did the research team do?

The research team assigned caregivers to one of the two programs by chance. Both programs offered six sessions over the course of six months. Each session ranged from 60 to 90 minutes. Social workers, who spoke both English and Spanish, led both programs.

Caregivers in the NYUCI group received six counseling sessions in their home or at another convenient place. Four of the sessions were family sessions. The caregiver could choose what family members or close friends to include. The caregiver, along with the family when present, decided on the focus for each session.

Caregivers in the REACH OUT group received six in-home sessions. The sessions focused on skill building and problem solving. The caregivers created an action plan to address their problems. They also received information about dementia, self-care, safety, and other caregiver issues.

Caregivers took surveys before starting the programs and again six months after the programs ended. The surveys asked about burden, depression, stress, and physical function. The research team looked for changes in the caregivers’ answers to the survey questions.

What were the limits of the study?

The study only included family caregivers in New York City. The results may be different in other places. Also, the study may have been too short to see changes in signs of depression or physical function.

Future research could test the programs in different places or for a longer time.

How can people use the results?

Both REACH OUT and NYUCI reduced feelings of burden and stress in Hispanic caregivers of relatives with dementia. Organizations that serve Hispanic caregivers could consider offering such programs.

Objective

(1) To compare the effectiveness of two interventions for Hispanic caregivers of people with dementia in decreasing caregiver burden, depressive symptoms, and stress and improving physical function; (2) To examine whether being a spouse or a child of the care recipient predicted the effectiveness of the interventions

Study Design

The research team conducted a pragmatic randomized controlled trial to test the comparative effectiveness of the New York University Caregiver Intervention (NYUCI) versus the Resources for Enhancing Caregiver Health: Offering Useful Treatments (REACH OUT) program. Community organizations that serve caregivers helped the research team design the study and recruit participants.

The study included 221 Hispanic caregivers of relatives with dementia. The caregivers lived in New York City. The average age of caregivers was 58, and 83% were women. Most caregivers were adult children (63.3%) or spouses (31.7%) of the care recipient.

Researchers randomly assigned caregivers to either the NYUCI or REACH OUT groups. Both interventions offered six sessions over six months. Each session lasted 60 to 90 minutes. Social workers who were bilingual in English and Spanish with experience in dementia and working with caregivers led both programs.

Caregivers in the NYUCI group received two individual sessions and four family counseling sessions that included relatives or friends suggested by the caregiver. The sessions took place in the home or at another convenient location. The caregiver, along with the family when present, decided on the focus for each session, such as learning techniques for managing troublesome behavior.

Caregivers in the REACH OUT group received six in-home sessions focused on creating a written action plan targeting specific problems, such as improving caregiver health or managing problem behaviors. Caregivers also received a notebook with information about dementia, self-care, safety, and other relevant caregiver topics.

In surveys given at baseline and after six months, researchers compared changes in caregivers’ responses. Researchers also conducted subgroup analyses for differences between caregivers who were spouses versus children of the care recipient.

Results

• Burden. Caregivers in both intervention groups experienced significant reductions in caregiver burden after six months (both groups p<0.001). For both groups, subgroup analyses indicated that the reduction in burden was larger for caregivers who were spouses than those who were children of the care recipient.
• Depressive symptoms. Neither group had significant reductions in depressive symptoms. Subgroup analyses found no differences in depressive symptoms between spouses or children of the care recipient.
• Stress. Caregivers in both groups experienced significant reductions in stress (both groups p<0.05). For both groups, the reduction in stress was larger for spouses than for children of the care recipient.
• Physical function. Caregivers in neither group experienced significant changes in physical function. Subgroup analyses showed no differences in physical function between spouses or children of the care recipient.

Limitations

Follow-up was relatively short, which may have limited the ability to detect changes in depressive symptoms. It is also unknown how long the effects of the interventions last or if the results would be different in other places. Sample sizes did not permit more in-depth analyses of the subgroups.

Conclusions and Relevance

Both NYUCI and REACH OUT were effective in reducing burden and stress among Hispanic caregivers of relatives with dementia, particularly among spouses of the care recipient. Organizations that serve Hispanic caregivers could consider offering these or similar programs.

Future Research Needs

Future research could test the interventions over longer time periods to assess possible effects on depressive symptoms and examine whether the reductions in burden are maintained over time.