Mental Health Wishlist

Caregiver Distress is on the Rise – Wishlist Shares What Caregivers Say They Need

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 2019 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%). 

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

Our findings are based on interviews and surveys of more than 1,000 Ontario caregivers, including caregivers who support a child/youth or an adult with mental health challenges.

Here are some of the most common and important wishes of caregivers:

  1. Greater empathy and respect – They want to be a partner and contribute to 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 condition of 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.

Read the full Caregiver Wishlist