Senior woman with her caregiver

Family Caregiving is a public health and economic security issue. Caregiving is a journey unlike any other. To those who have not yet traveled this road, you need to know that most of us will. It is difficult to describe the multitude of situations that evolve to create the experience of providing care for a family member or friend. Caregivers are often rewarded with great satisfaction and appreciation that come from providing assistance, but at the same time, the caregiving role comes with formidable challenges.

Caregivers can provide many services such as complex medication management, care coordination, wound care, mental health planning & supervision, personal care, financial management, health insurance advocacy, transportation, emotional and spiritual support, medical equipment operation, interpreting medical directions, and many more activities that require attention and advocacy.

Caregivers are often family members providing unpaid care for a spouse, parent, other relative, or friend. They, like the person they are caring for, deserve service, education, and advocacy including: respite, wellness & support, access to resources as well as supplemental items for health and safety.

Spousal and adult-child caregivers reported greater social isolation as they provide care over time. Males who provide about 40% of the caregiving are even more socially isolated than female caregivers. Clearly this increased social isolation creates a strong need for intervention programs that aim to enhance social connectedness among family caregivers, and especially for those who perform intensive caregiving, are older, and are from a lower socioeconomic status.

The caregiver needs to provide advocacy on many levels and still deal with the caregiving stress that they will experience. Some advocacy methods include: Write down the issues that need attention and what you want to say. Address what has already been done to try to resolve the various problems and exactly what needs to be done. This can occur with other family members, various providers, including physicians and other medical professionals. Your participation as a caregiver clearly supports and enhances the care given to the care recipient. It is also important to remain calm at all meetings and to be patient afterwards. Screaming and shouting does not work. The goal is to provide better care and health, life satisfaction, pain relief, improve strength and wellness.

Other areas of advocacy include knowing first aid basics such as how to check responsiveness and recognize symptoms. Knowing life-saving skills such as CPR (cardiopulmonary resuscitation) and how to respond to choking can be real valuable in providing an advocacy function in caregiving. However, privacy regulations specific to health information make it difficult for caregivers to get the information and support they need to be effective in their caregiving responsibilities. Caregivers are increasingly expected to manage complex medical and/or psychological conditions with little to no information, instruction, or support. They may need technical medical information to manage changes in behavioral health, provide wound care, operate medical equipment in the home, or administer medications correctly. Caregivers must anticipate needs and changes in health status, but they are often not included in the conversation or they are overwhelmed by the information. The results of this can be costly – crises, medical complications, hospitalization, even death.

Caregiver stress has costs. When a family caregiver is not empowered with knowledge and resources, they feel overwhelmed with the endless tasks in caregiving which can lead them to taking their loved one to the emergency room. When the community does not prioritize the health of the caregiver, the amount of people needing medical care is exponentially increased. Not only will the patient need services, so will the caregiver. “These caregivers fill an important role for their families and provide an estimated $375 billion in cost savings nationwide”6, costs that the health care system will incur if caregivers are not supported.

Supports for Family Caregivers – Family caregivers require assistance to navigate the complex systems and information essential to providing quality care. They also need training on fundamental caregiving responsibilities, such as dispensing medications and managing complex medical and psychological conditions, providing personal care, financial management, and coordinating transportation. Receiving this support and training translates into better caregiving and cost savings to our health and social service systems.

Caregivers are a critical but often unrecognized member of the health care team. Integrating family caregivers into a team-based approach helps caregivers be effective in providing the specialized care their family member needs, and is critical to reducing unnecessary medical care use (e.g. emergency room visits or hospitalizations). Integration means family caregivers are included appropriately in decisions about their family member’s health and medical care, including access to the person’s medical records, training regarding specialized procedures or medication administration, or being provided information about caregiving resources and support. The current transformation and streamlining of the primary care and long-term service systems to becoming more patient- and family-focused provide opportunities for caregivers to be integrated as a team member.

If a loved one is taking medications, for example, that is unfamiliar to you, take time to learn the what, why, and how often and any side effects. This is a proactive action step.

More than 40 million Americans care for older parents, spouses, children with disabilities or other loved ones, helping them live independently at home and in their communities—where they want to be. These family caregivers take on huge responsibilities that can be overwhelming, stressful and exhausting. Many also juggle full- or part-time jobs.

In fact, 60 percent of family caregivers work. That’s 24 million workers

In states across the country, AARP is fighting for common-sense solutions — to help these family caregivers balance work and caregiving responsibilities so they don’t lose pay or risk losing their jobs. These solutions include:

  • State improvements to the federal Family and Medical Leave Act (FMLA) or to employers’ paid and/or unpaid leave policies.
  • ELECT (Eligible Leave for Employee Caregiving Time) Act allows an employee to use some existing sick leave to care for a family member.
  • WORC (Workplaces Offering Relief for Caregivers) Act allows family caregivers to take unpaid leave to care for a loved one.
  • RELIEF (Respite: Living Independently, Energizing Families) Waiver to provide a limited respite care benefit to allow family caregivers to remain working while meeting the needs of their loved ones

Typically within caregiving surveys, we find that the majority of caregivers (40 or 45-plus) are women who are caring for a parent. Most of these caregivers help their loved ones with transportation, household chores, meals, or shopping. A few other notable findings the state surveys reveal include:

  • Many caregivers perform more complex tasks such as bathing or dressing, medication management, or other medical or nursing tasks.
  • Many caregivers have been employed at some point during their caregiving journey and feel stressed in balancing their job and their family.
  • Many caregivers feel stressed emotionally due to their caregiving responsibilities.
  • Not surprisingly, if they needed help themselves due to aging or illness, most voters would prefer to receive care at home with caregiver assistance.