According to a report published by the European Parliament in 2021, 80% of all care in the EU is provided by unpaid caregivers to loved ones with a serious condition.1 These unsung heroes offer countless hours of time to help others – often at the expense of their own self-care. With an aging population, more adults will likely find themselves in a caregiver role at one point or another during their life.

Underserved does not mean undeserved

As this burden is becoming a growing concern, AXON decided to explore what it’s really like for these invisible stars. In an AXON network-wide survey we discovered:

  • 100% of survey respondents feel overwhelmed and stressed in their unpaid caregiver role
  • 100% say their physical and mental health has been negatively impacted
  • 43% admit they feel a financial burden in their role as an unpaid caregiver
  • 100% report their personal lives have been impacted by their caring role

Conversely, other surveys conducted demonstrate that a percentage of caregivers report a positive experience in their role as a caregiver, citing that their relationships with the ones they are caring for have strengthened.2 They also feel a strong sense of giving back to someone who has cared for them, alongside the satisfaction of knowing that their loved one is receiving excellent care, undergoing personal growth, and experiencing greater purpose in life.

However, most caregivers surveyed across the board also admit there is an overwhelming sense of loss of identity, and this feeling is exacerbated by the lack of support available to them. Keeping afloat in the modern world is difficult enough. There are stressors and pressures coming from all angles – managing a full-time job, taking care of family, trying to fit in a social life – one’s own self-care is continuously deprioritized, and this takes a massive toll.

There is no definitive training manual for caregiving. Those taking on this role are often expected to meet difficult demands, understand complex treatment regimens and carry the responsibility of adherence to treatment.

Reclaiming ‘You’

It’s time for caregivers to reclaim their identity. Taking care of themselves is not selfish – it’s essential. To provide a loved one with the best possible care, caregivers need to be the best version of themselves – this means setting boundaries and carving out personal time to do things that they enjoy, which allows them to relax.

Industry’s responsibility

While caregivers have a responsibility for self-care, the healthcare industry must be held accountable by including this growing population in treatment plan conversations and providing necessary support. It’s time to shift the conversation and shine a light on the needs of the selfless.

Simple solutions that can have significant impact include:

  • Involving the caregiver in treatment plan discussions
  • Developing core materials that communicate directly with the caregiver
  • Creating a support community to bring caregivers and advocates together
  • Offering flexible work schemes that allow caregivers to balance the many jobs they hold (paid and unpaid)

There are many ways that caregivers can be offered support. By carefully listening to this community, understanding their needs and collaborating to find viable solutions to the challenges they face, we can make a meaningful difference. So, the question is, will you be including caregiver needs in your next conversation?

References

  1. European Parliament. Report on the challenges for urban areas in the post-COVID-19 era. Available from: https://www.europarl.europa.eu...
  2. American Psychological Association. Positive Aspects of Caregiving. Available from: https://www.apa.org/pi/about/p...