Caregiver Distress is on the Rise. New Report Shares Wishlist of What Caregivers Say They Need

A young woman and her father, smiling outside

In Ontario, 3.3 million ordinary people including children and youth are caring for family members, partners, friends or neighbours with physical and/or mental health needs.

While many caregivers find their role rewarding, previous research from Health Quality Ontario has shown that one in four caregivers are experiencing distress, anger or depression and according to CIHI research, nearly half (45%) of caregivers of those with dementia are experiencing distress.

A new opinion poll from OCO indicates that 46% of caregivers who support someone with a mental health challenge are not handling the situation well. 57% say they are not coping well emotionally and 47% say they are not coping well physically. A strong majority agree they often feel anxious or worried (87%), overwhelmed (85%), frustrated, helpless and trapped (82%) and are getting disturbed sleep (80%). 

The Ontario Caregiver Organization (OCO), which works to improve the caregiving experience for all caregivers, wanted to dig deeper to better understand the mental well-being and the factors that contribute to caregiver distress, anxiety and depression. The results are shared through The Caring for the Mental Health of Caregivers Wishlist. The Wishlist  reveals what caregivers believe, if addressed, can improve their own mental health.

The summary of our findings are based on the analysis of data from interviews and surveys of more than 1,000 Ontario caregivers including caregivers of those who support a child or youth with mental health issues and those who support an adult with mental health challenges.

Here are some of the most common and important wishes of caregivers. Caregivers wish for:

  1. Greater Empathy and Respect – They want to be a partner and contribute to the decision making and care planning
  2. Help Navigating the Health Care System – Caregivers want help so that navigation is easier and more efficient. Some don’t know where to start at all.
  3. Easier Access to Information and Resources – Caregivers want the right information at the right time about the person they care for and resources for their care but also for themselves.
  4. Timely Access to Services – Wait lists are long, Caregivers want the person they care for to have timely access to care.
  5. Caregiver Mental Health Support – Caregivers recognize the need to care for themselves. They see counselling, peer support groups and respite as key ways to take care of their own mental health needs.

Amy Coupal, Ontario Caregiver Organization CEO says that the Caregiver Wishlist series is meant to provide new and important knowledge to address the needs of caregivers. She says, “we hope this new information will encourage caregivers to reach out for supports early in their caregiving journey, as well as create a dialogue about the mental health of caregivers among caregivers, health care professionals, service providers, policy makers and the general public. The Ontario Caregiver Organization will also use what we heard to guide our work”.

Read the Caregiver Wishlist

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