More than 9 out of 10 caregivers feel unsupported

Our new study has found 92 per cent of caregivers need help. Better supporting the family caregiving population – the backbone of health and care systems around the world – means addressing the factors leading to overwhelm and stress, such as isolation and hefty administrative loads.

Those who care for a loved one in an unpaid capacity are, by and large, burnt out. So say the results of a study we recently ran with our community. Responding from across the globe, 92 per cent of the 100+ Heba users who participated in our survey said they felt overwhelmed, stressed and unsupported in their role of carer to a child or young person.

Mother of three Tameka Simmons who cares for her daughter, Evely, who has a rare genetic condition and is blind, says: “The most challenging aspect of being a parent carer is constantly having to fight for quality care, resources and accessibility. The relentless advocacy required to ensure Evely gets what she needs can be exhausting and overwhelming.”

As well as needing to navigate fragmented and complex health, funding and social care systems, carers often report feeling misunderstood and isolated from their peers.

Melanie Dimmitt, a mother of two who cares for her son, Arlo, who has quadriplegic cerebral palsy, says: “It’s frustrating that no one really understands how much you’re doing, just to get through each day. We are on, sometimes 24/7, caring for our kids. And even when things seem calm, with complex children like mine, there’s always the threat of a medical emergency.”

Unseen labour accounts for several hours of a caregiver’s already stretched schedule and can include appointment scheduling, managing medications and supplies, liaising with schools, paying medical bills, advocating for funds, learning home healthcare and researching.

Of the respondents to our study, 85 per cent said Heba was supporting them as a caregiver by providing 24/7 digital access to care management tools and expert caregiver guidance.

Sam Milliken-Smith, co-founder of Heba, says: “We built Heba with a vision to make sure that all families caring for a loved one have access to the resources they need. Our health and care systems around the world rely so much on the silent work of unpaid carers – and we can do so much better to support them.”