October 25, 2006

Caregivers of People With Mental Illness Say Treatment Disruption Has Serious Consequences

Read more... Schizophrenia Coping

The disruption of a family member's treatment for mental illness and subsequent worsening of psychiatric symptoms can have harsh financial, physical and emotional consequences for families, according to results from an international survey of caregivers of individuals with schizophrenia, bipolar disorder and schizoaffective disorder. Keeping Care Complete is a survey of 982 family caregivers, including 200 caregivers from the United States.

"One in 17 Americans suffer from serious mental illnesses worldwide. When you consider all of the parents, siblings, spouses and children connected to these individuals, you see how far the shadow of serious mental illness is cast," said Preston J. Garrison, secretary general and chief executive officer, World Federation for Mental Health. "This survey shows that many caregivers have experienced both the chaos of their loved one's relapse and the relief that comes with stabilization."

Keeping Care Complete reveals the devastating consequences of relapse, defined as the worsening of symptoms after apparent recovery, and sheds light on a desire among caregivers for doctors to focus on long-term care rather than managing crisis situations. Independent market research company Ipsos conducted the survey of caregivers in the United States, as well as in Australia, Canada, Germany, France, Italy, Spain and the United Kingdom.

Relapse Consequences and Triggers

Caregivers whose family members experienced relapse reported that as a result, their loved ones were unable to work, were hospitalized, tried to commit suicide and/or were incarcerated. Many of these caregivers also said that their own health and financial situation deteriorated following the relapse. Among the 110 American caregivers whose family members stopped taking their medication despite his/her doctor's advice, 89 percent reported their family member relapsed after discontinuation.

Continuity of Treatment

Once patients find medications and psycho-social therapies that work for them, it is important for them to stay with them. In addition to medication, caregivers cited family support and social support, talk therapy, exercise, diet and nutrition, having responsibilities and a stable schedule among key factors that help keep their family member well.

Improved Expectations

Those surveyed, indicated their desire to raise expectations and focus on long-term wellness. Seventy-two percent of American caregivers agree they would like their family member's doctor to focus more on long-term care rather than managing crisis situations. Carolyn Spiro, M.D., agrees that healthcare providers need to be encouraged to consider the long-term needs and goals of individuals diagnosed with schizophrenia, schizoaffective disorder and bipolar disorder. Spiro is co-author of Divided Minds: Twin Sisters and Their Journey through Schizophrenia, a memoir written with her twin sister Pamela Spiro Wagner, who was diagnosed with schizophrenia in college.

"Keeping Care Complete highlights the complex web of interdependent supports that enable individuals living with serious psychiatric illnesses to achieve complete care and long-term wellness," says Spiro. "Complete care is made up of effective medication, compassionate providers, robust community-based programs and empowered family members. As shown in the survey, family members can provide significant insight into these devastating but treatable illnesses."

The Survey findings are available at The World Federation for Mental Health website: www.wfmh.org.


Dr.spiro has done the research with heart and her findings reflect the feelings and worry of caregivers.
As the survey is limited to advanced USA/EU countries; it doesnot reflect the main worry of cares of third world. AFTER US WHOM?WHAT?HOW?CARE?SECURITY FOR THE WARD? etc.

Posted by: captainjohann at October 28, 2006 08:36 AM

Like Captain Johann I’m very concerned about what will happen to my daughter when I’m no longer alive to keep an eye on her.

Our community just doesn’t have the resources to give my daughter the quality care she deserves.

I don’t want to burden my two other daughters but at the same time who else can I count on to watch over my mentally ill daughter.


Posted by: Yaya at October 28, 2006 05:35 PM

Because the medications have so many bad side effects sufferers do not want to comply and stay on their meds. Thus causing more relapses. I hope the pharmasutical companies can keep the effectivity of the meds but also work on these horrible side effects like akathisia (ie. very uncomfortable restlessness), sexual side effects like loss of libedo and other sexual functions, weight gain, as well as other side effects. If they fix those side- effects sufferers will dramatically and increasingly stay consistently taking their meds.

Posted by: P4r4 Enator at November 16, 2006 04:34 AM

I too share the caregiver worry over how my brother will get along without family to care for him. He suffers from schizoaffective disorder and currently lives on his own but requires constant monitoring for medication consistency among other things. There is no easy solution except to be involved and committed to the best of my ability. And yes, the side effects of some medications are horrible, Even if I thought there was a better medication the thought of changing over my brother's meds is worrisome and presents its own challenges.

Posted by: Mary Logan at February 21, 2007 06:17 AM

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