The holiday season is fast on our heels and aside from the hustle and bustle of decorating, shopping and cooking, it's the time of year we hope to spend catching up with the people we care about the most. But, for those who are caring for a family member or loved one with schizophrenia, the holiday season can hold much uncertainty and emotional stress.
Often misunderstood and stigmatized, schizophrenia is a medical condition that interferes with an individual's ability to think clearly, control his emotions and maintain consistent and meaningful relationships. As a mental disorder, schizophrenia often results in a person losing touch with reality, making it extremely challenging to distinguish between what is and isn't real. This loss of reality and inconsistent behaviour can make it difficult for people with schizophrenia to independently support themselves, which is why caregivers play such an important role in the lives of their loved one with this disease.
Caregiving for a loved one with schizophrenia presents unique challenges. A recent survey, commissioned by Janssen Inc., which polled caregivers of people living with schizophrenia in Ontario, found that caregivers are deeply committed and active in the daily care required. On average, they devote 20 hours a week to supporting their loved one with schizophrenia. This constant care and commitment results in an emotional, financial and social burden for caregivers:
• Socially -- As a result of the financial impact of caring for someone living with schizophrenia, caregivers have had to make significant changes in their own life including spending less on; entertainment and travel (47 per cent), clothing and household items (33 per cent), food (26 per cent), and health care (21 per cent).
• Emotionally -- The emotional toll of caregiving is significant, resulting in caregivers feeling frustrated (61 per cent), sad (49 per cent), overwhelmed (47 per cent) and inadequate (43 per cent).
• Financially -- Those surveyed say they personally support approximately 30 per cent of their loved one's expenses.
A large part of the stress that caregivers face in managing their loved ones' schizophrenia stems from treatment adherence. The survey found that almost 50 per cent of caregivers ensure their loved ones are taking the correct medication at the right time and almost half are also frequently concerned about whether or not medication has been taken. By ensuring that schizophrenia is optimally managed by treatment adherence, some of the burden will be reduced for the patient and the caregiver, and improve quality of life for both.
There have been several positive advancements in effective schizophrenia treatment in recent years -- some of which can be administered less frequently. These new treatments have helped many caregivers reduce the daily burden of ensuring a patient is taking his or her medication correctly.
Although caregivers are significantly burdened by the care required for their loved ones living with schizophrenia, they remain positive about their role and the difference they are making in their loved one's life. The survey found that nearly 92 per cent of caregivers surveyed feel like the sacrifices they are making to provide care are worthwhile, and the majority of caregivers also feel they play an important role in overall recovery (68 per cent).
I encourage caregivers to keep an open line of communication with doctors about the burden they are facing and how they feel about their roles. This can lead to a stronger and more effective partnership, allowing caregivers to work together with their doctor to ensure their loved one's schizophrenia is optimally managed. Caregivers should feel hopeful that as a result of early diagnosis, new research and better treatment options, they and their loved ones can improve their functional outcomes and quality of life.
If you're a caregiver, what kind of challenges do you deal with on a daily basis? Do you have any tips for managing your stress? Please share your tips in the comment section below!
To learn more about schizophrenia or the role that caregivers play in looking after their loved ones with this disease, visit schizophrenia.ca.