Understanding the Experiences of Caregivers for People with Psychosis

Caregivers play an important role in supporting people with psychosis -both throughout the treatment process and in times of crisis. Research shows that people with involved caregivers have fewer relapses and a reduced risk of suicide. But caregiving can be overwhelming, often leading to burnout, stress, and depression.

The following information is based on data from an online survey on the Mental Health America (MHA) website. We have summarized the challenges faced by caregivers of people with psychosis and possible solutions to improve their experiences.

Demographics of Caregivers

The survey was completed by 526 people. Some key information about respondents are as follows:

82% of caregivers were female.
70.5% of the caregivers lived with the person they were caring for.
50.3% of caregivers were caring for a child.
Caregivers were primarily between 35-64 years old. The largest groups were between ages 55-64 (21.9%) and 35-44 (21.1%).

The Stress of Caregiving

Caregivers deal with a lot of stress. They have to take care of themselves while also helping the person they care for. Many find the mental health system hard to understand.

Nearly 90% of caregivers expressed a need for more support. Based on the survey, caregivers reported feeling helpless, out of control, and burnt out.

The stigma associated with mental health conditions makes these feelings more difficult. Many caregivers may also face accusations of contributing to their relative’s condition.

Conflict with their loved one can be another source of stress for caregivers. Two-thirds (66%) of caregivers reported having disagreements with the person they care for. Caregivers said they argued most about things like:

daily chores
how much care is needed
relationships with family and friends
sticking to treatment

Involvement in Treatment

According to the survey, most caregivers wanted to be more involved in their loved one’s treatment. Caregivers of people with psychosis were more likely to take part in treatment discussions (59.4%) compared to other caregivers (47%).

However, only half of caregivers were satisfied with their interactions with healthcare providers. Dissatisfaction was highest among caregivers of people with psychosis compared to other mental health conditions. This is possibly due to a lack of hope for recovery and challenges with their loved one's treatment adherence.

Only a small number (6.9%) of caregivers not involved in their loved one's treatment said they preferred it that way. Most caregivers wanted regular communication with their loved one’s providers, either weekly or monthly. They often worrkied about whether their loved one is following their treatment plan.

Possible Supports for Caregivers

Caregivers who took the survey expressed a strong interest in online treatment and tools. They hoped online interventions would improve communication with their loved ones and help them take care of themselves.

Support groups can provide emotional support, practical tips, and resources to support caregivers. Caregivers can use the MHA Family Care Navigator to find services near their loved one. Finding support can ensure both caregivers and their loved ones get their needs met.

Take a Mental Health Test

If you or a friend are struggling with your mental health, take an anonymous, free, and private mental health test. It only takes a few minutes, and after you are finished you will be given information about the next steps you can take based on the results.

Take a screen