The Importance of Caregiver Support

October 21, 2013 § Leave a comment

By Lois Simon, President of Commonwealth Care Alliance

In late January, my father passed away after enduring two and a half years of pancreatic cancer. Despite his valiant efforts to remain independent, his disease and treatment diminished his ability to complete daily tasks independently; along with my mother, I served as his daily caregiver during his last years of life.

This was not my first experience fulfilling this role. Twenty-five years ago I supported my husband in the care of his ailing father and then five years later, for my grandfather. Through these experiences I learned firsthand how important caregivers are to our healthcare system and to improving the quality of care.

The importance of caregiver support resonated with me after one particular experience while caring for my father post-surgery. As his caregiver I was given his prescriptions and instructions on administering them. I set out to fulfill his prescriptions the same day, only to be met with one obstacle after another.

My father’s pharmacy did not have his medicine readily available nor did his insurance cover the prescription – a staggering $1500 a month. This came as a shock.  We were advised that his medicine was carried locally and that it would be covered, as his previous medication was. After calling the hospital and speaking with various employees I discovered his medicine was changed without his consent.

With my help we were help to get his medicine corrected later that day. I cannot help but wonder what would have happened if I had not been living so close by and was able to help. What do other patients do without the aid of a caregiver? During this time I realized how important the Senior Care Options program is for patients like my father.

My experience is more common than you might think. There are currently an estimated 43.5 million family caregivers in the United States providing care to seniors over age fifty and with the percentage of seniors expected to rise to nearly 20 percent of the general population by 2020, that number is bound to increase.

The traditional healthcare system simply cannot sustain so many aging individuals without a robust support system for individuals who provide care to the elderly on a daily basis. Though Medicare provides coverage for in-home specialized caregivers, patients must first meet specific requirements and they only grant coverage to the most disabled patients. As a result, seniors who are incapable of completing all of their daily tasks independently but are not completely immobilized are often left in the dark. The need for family caregivers is obvious, but in order to ensure we have enough well-equipped individuals to fulfill this role, we need to invest now.

Being a caregiver is no simple job. Nearly half perform medical and nursing tasks for family members with multiple chronic physical and cognitive conditions. This can include everything from managing medication (which includes administering intravenous fluids and injections) to care coordination (such as scheduling doctor’s appointments and settling insurance claims). For anyone who’s ever attempted to navigate the US healthcare system, they’ll tell you that it’s a complex and intimidating place and the pressure is immense. Despite the high demands, caregivers receive no training and often have to make difficult complex decisions about topics of which they have little knowledge. For example, nearly 50 percent say they received no training about how to administer medications. Instead, many learn about their family member’s illness through online research or word of mouth.

In addition to the technical complexities that come with the role, there are also serious emotional effects. Caregivers are two times more likely than the general population to suffer from depression, with some estimates suggesting that up to 60 percent experience symptoms of clinical depression. Furthermore, they often report high levels of stress, high blood pressure and diabetes.

So how can we help the individuals that play such a crucial role to our healthcare system? First and foremost, individual physicians and healthcare practices must develop clear outlines for interacting and communicating with these individuals. Physicians and nurses must clearly engage family caregivers in developing care plans, including details like how to administer medications and what symptoms to watch out for. Family members want more training; it’s time that medical healthcare professionals give it to them.

Secondly, we need to ensure that we’re not only checking on the ill, but also on the people that care for them. This should be part of a larger overall community effort.  At Commonwealth Care Alliance, we’re taking our first steps towards this model. We’ve developed a program called Strengthening Care Together to help family caregivers feel supported while caring for their loved ones.  The six week education program aims to empower family caregivers, and help to build knowledge and coping strategies so that they may do the most important job to the best of their ability. The caregivers are taught how to take care of themselves while simultaneously caring for a relative or friend.

Family caregivers play an integral role in our healthcare system. It’s time we helped them in return.

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