THE CHALLENGES OF CAREGIVERS
PAUSE TO CARE FOR SOMEONE ELSE WHO GIVES OUT CARE
PAUSE TO CARE FOR SOMEONE ELSE WHO GIVES OUT CARE
COLLEEN REITER, RDH, MS
Imagine working all day caregiving as a hygienist and then going home to serve as a caregiver for a disabled spouse or loved one, or an aging parent. The caregiver role is becoming more of a reality than ever before, so it is likely that you could find yourself in that position. The home healthcare/caregiving industry is growing rapidly because more people need care. As a greater number of people become 65 years of age and older, the demand for caregiving will also increase.
The Family Caregiver Alliance states that "43.5 million Americans care for someone 50+ years of age, and 14.9 million care for someone who has Alzheimer's disease or other dementia."1 Those needing caregivers are older adults, individuals injured from accidents, those with traumatic brain injuries, injured military personnel, special needs children, patients with dementia and Alzheimer's, and other chronically ill persons.
Family members provide a substantial amount of free (informal) care for relatives. "In 2011, informal caregiving was valued at $450 billion, exceeding the value of paid home care, more than total Medicaid spending in 2009, as much as Wal-Mart sales ($408 billion), and nearly exceeding total expenditures for the Medicaid program in 2009 ($509 billion)."2
As a dental hygienist who has served as a caregiver, I know that caregiving can be a strenuous, yet challenging and vital role that requires constant personal growth and flexibility to be successful. This article will increase your awareness of and sensitivity to patients and co-workers who are caregiving, so you can better serve them. We'll discuss caregivers, the challenges they face, and how those challenges impact their physical, psychological, dental, vocational, and financial health.
According to the Merriam-Webster Online Dictionary, a caregiver is defined as "a person who provides direct care (as for children, elderly people, or the chronically ill)."3
Caregivers may perform a variety of tasks such as cooking, cleaning, providing companionship, and assisting clients with medications, bathing, toileting, dressing, eating, shopping, errands, and getting patients to doctors and pharmacies in addition to other tasks.
THE CHALLENGES CAREGIVERS FACE
The more challenging the patients' needs, the more complex, demanding, and stressful the caregiver's role might be. Caregiving for patients with brain-related issues such as dementia, Alzheimer's, brain injuries, memory loss, mental illness, or any of these combinations along with physical disabilities may be more stressful than for clients with less complex needs.
Stress and decreased time for personal needs are two major challenges that caregivers face. Stress may be constant as caregivers must flex and adjust to sudden changes and abnormal situations to accommodate their patients' needs. A client with a history of head trauma or vertigo may have unexpected falls or accidents that require quick emergency room visits. Clients with addictive behaviors, head trauma issues, or mental health issues may require crisis stabilization or rehab center visits, especially if they sneak substances, choose not to take medications as prescribed, or self-medicate with multiple over-the-counter medications - despite the caregiver's oversight.
There may not be a routine schedule each day - just routine tasks to get done between doctor and pharmacy visits. Constant change and stress often leaves little time for handling personal needs. Patients with brain-related issues may also exhibit unpredictable behaviors, agitation, angry outbursts, or inappropriate behaviors, which might include verbal or physical abuse from clients who are combative and resistant. Add to that stress and constant change, the wait times in doctors' offices, a lot of driving to and from health-care facilities and pharmacies, and caring for the patient, and the caregiver may feel overwhelmed and/or exhausted.
Caregiving can often be undervalued by those who have never served in that role. So another stressor comes if caregivers are ignored by health-care providers, thinking that the caregivers are not credible. Some caregivers do have college degrees and health-care experience, plus some spend many hours a day with their patients. So it is wise for health-care providers to listen closely and give careful consideration to the caregiver's observations and suggestions about their clients' needs. As you know, a team effort brings greater success for everybody involved.
Caregivers need to have good communication skills and interpersonal skills; a lot of patience and stamina; and knowledge of health-care terms, medical conditions, and medications, because they often need to work through family situations, crises, and life-threatening events related to their client's care, which may also involve law enforcement officers and attorneys.
Often caregivers find themselves working hard, receiving low pay, no vacation days, holidays, or sick days, and no health or dental insurance, with little ability to afford it. They also may have limited free time to spend with friends or to handle personal affairs.
Psychologically, whether paid caregivers or family caregivers, the challenges they face can easily result in burnout. Caregivers need to plan time for self-care so they do not slip into a state of mind where they feel discouraged, trapped, stuck, hopeless, or depressed.
HOW CAREGIVING CHALLENGES IMPACT SOMEONE'S LIFE
The caregiving challenges just discussed can significantly affect a person's physical, psychological, dental, and financial health, as well as his or her vocational well-being. Physically and psychologically, the stress can create high cortisol production, which can bring with it increased weight gain, fatigue, a depressed immune system, adrenal fatigue, lack of energy, interrupted sleep, hormonal imbalances, difficulties thinking clearly, and/or major depression.
According to Drs. Janice Kiecolt Glaser and Ronald Glaser, the "stress of family caregiving for persons with dementia has been shown to impact a person's immune system for up to three years after their caregiving ends, thus increasing their chances of developing a chronic illness themselves."7
Zarit in the Assessment of Family Caregivers: A Research Perspective, states that "40% to 70% of family caregivers have clinically significant symptoms of depression with approximately a quarter to half of these caregivers meeting the diagnostic criteria for major depression."8 With limited free time and being tired, the caregiver's ability to handle personal needs and cultivate friendships may decrease, which may then contribute to isolation and depression. The impact of stress is especially significant in some caregiving situations. "Family caregivers experiencing extreme stress have been shown to age prematurely. This level of stress can take as much as 10 years off a family caregiver's life."9
A caregiver's dental health may also decline under these stressful conditions with the outcome being a neglect to floss regularly, brush well, eat healthy, and make self-care a priority. These may contribute to increased caries or the development of periodontal disease.
The physical and psychological impact of someone caregiving at home may also bring financial and vocational stress. Being tired from caregiving duties may limit how well the person performs at work, which may cause work hours and paychecks to shrink.
With the need for caregivers increasing, you can expect to have more patients and co-workers who are caregiving. Your awareness and sensitivity to their needs will increase patient satisfaction, patient loyalty, and referrals to your office, as well as improve efficiency and create a more pleasant work environment.
TYPES OF CAREGIVERS
There are family caregivers, as well as professional caregivers who either visit patients routinely or who live with their clients. The client's level of care needed and the family's needs dictate the caregiver's required credentials. You may be surprised who the caregivers are who sit in your dental chair and the number of patients who have those responsibilities.
More often, caregivers are family members who sacrifice their time, lives, and careers for spouses or loved ones who need care. The National Alliance for Caregiving, states that the "typical family caregiver is a 49-year-old woman caring for her widowed 69-year-old mother who does not live with her. She is married and employed. Approximately 66% of family caregivers are women. More than 37% have children or grandchildren under 18 years old living with them."4
Looking only at the care of older adults, "the value of the services family caregivers provide for 'free,' when caring for older adults, is estimated to be $375 billion a year. That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion),"5 according to the National Alliance for Caregiving and Evercare.
Foster parents, group home resident managers, single parents, parents of disabled or special needs children, and parents of troubled, emotionally disturbed, or delinquent children are also caregivers in stressful and challenging roles.
Even children who sit in your dental chair may be caregivers for one of their parents. The National Alliance for Caregiving and the United Hospital Fund noted that "1.4 million children ages 8 to 18 provide care for an adult relative; 72% are caring for a parent or grandparent; and 64% live in the same household as their care recipient. Fortunately, most are not the sole caregiver."6
Since professional (paid) caregivers are not always known by the families, they typically are required to submit to background checks and have work references checked closely. They also have to meet established caregiving competency levels by state governing bodies, agencies, and families hiring them to verify their credentials and to prevent patient abuse, harm, or neglect.
SO HOW CAN YOU BEST HELP YOUR CAREGIVING PATIENTS AND YOUR PATIENTS WHO UTILIZE CAREGIVERS?
Ways to support and encourage caregiver patients and caregivers of your patients
Help your caregiver patients by maintaining a soothing, peaceful environment. Ask if they would like the music lowered or off in your operatory, or encourage them to bring earplugs. They will likely absorb your tender loving care and encouraging words, so be generous! Look for ways you can serve them and make suggestions to benefit the whole person.
Put yourself in those caregivers' shoes and identify how you would like to be treated during a dental visit; then do it. Assess their dental needs, and then make suggestions and adjustments accordingly. Encourage them to eat healthy, take vitamins, and get out for walks.
Use a soft approach when presenting care needed. Remember, they may be in a survival mode. Yes, review their needs and their care program, but hard-sells to these patients may run them off.
Brainstorm with your co-workers to identify extras or freebies that you could offer, knowing that caregivers' finances may be limited and that they may have no savings. Show them what they can do at home to stretch their dental dollars. Minimize the need for expensive procedures when possible. Affirm them and recognize them for the persons that they are and for their caring roles.
Maintain a list of compassionate professional counselors to whom you can refer caregiver patients and keep their brochures available throughout your office for your patients to take. Because the stress level of caregiving can be very overwhelming at times, it is helpful to talk with someone professionally about the challenges. This is beneficial to the caregiver and ultimately to the caregiver's patient as well.
You might also maintain a list of organizations, churches, and other religious institutions, or community activities and exercise classes that might help your caregiver patients get out, socialize, and relax.
If you have caregivers bringing patients in for appointments, listen closely and consider what those caregivers may say about the patients as you create treatment plans and provide care. Then make recommendations on how to best help the patient at home.
Ways to support a caregiver coworker
If you have a caregiver co-worker, try to keep the work environment peaceful and decrease office stress. Utilize good communication and organizational skills. Caregiving at home may make it harder to do a good job at work. Take time to listen to your caregiver co-worker, go for walks at lunchtime, help the person find resources needed, and carpool if that's helpful.
Be creative and do all you can as a team to help decrease the likelihood of burnout for your caregiver team member, knowing that someday you may need the same help.
COLLEEN REITER, RDH, MS, is a consultant, speaker, freelance writer, and former university faculty member. She has served as case manager and patient advocate to those with physical and mental disabilities and traumatic brain injuries, and has also served them in caregiver roles. Colleen is also a Life Coach who has worked with diverse groups ranging from physicians and dentists, to those within the judicial system, the indigent, persons with brain injuries, and trauma survivors. She can be contacted at ColleenReiterRDHMS@yahoo.com.
1. Alzheimer's Association. (2011). Alzheimer's Disease Facts and Figures, Alzheimer's & Dementia: The Journal of the Alzheimer's Association, 7(2).
2. AARP Public Policy Institute. (2011). Valuing the Invaluable: Contributions, Costs, and Consequences of Family Caregiving, p.3.
3. Caregiver definition. Retrieved May 1, 2012 from http://www.merriam-webster.com/dictionary/caregiver
4. National Alliance for Caregiving (NAC) and AARP (2009, Nov.). Caregiving in the U.S. (Bethesda, MD: NAC, and Washington, DC: AARP), p.5.
5. Evercare and the National Alliance for Caregiving (2009). The Economic Downturn and Its Impact on Family Caregiving: Report of Findings (Minnetonka, MN: Evercare, and Bethesda, MD: NAC).
6. National Alliance for Caregiving (NAC) and the United Hospital Fund (2005). Young Caregivers in the U.S., p.5.
7. Glaser JK, Preacher KJ, MacCulom RC, Atkinson C, Malarkey WB, Glaser R. (2003). "Chronic stress and age-related increases in the proinflammatory cytokine IL-6." Proceedings of the National Academy of Sciences Online100 90-95.
8. Zarit S. (2006). Assessment of Family Caregivers: A Research Perspective in Family Caregiver Alliance (Eds.), Caregiver Assessment: Voices and Views from the Field. Report from a National Consensus Development Conference (Vol. II) (pp. 12-37). San Francisco: Family Caregiver Alliance.
9. Epel ES. (2004), Dept of Psychiatry, University of California, SF, et al. From the Proceedings of the National Academy of Sciences,101(49).