1. The Family Caregiver Alliance estimates that there are 52 million people in the United States who provide informal caregiving to friends or family members with chronic diseases or disabilities at an estimate cost savings of $257 billion to the US economy. This presentation will examine the cultural and sociological factors that make caregiving such a complex issue from the perspective of a caregiver of parents with complex medical conditions and a care recipient with childhood onset spinal muscular atrophy. BACKGROUNDBACKGROUND My father was my mother’s caregiver as her condition progressed. When his health began to deteriorate, his capacity to provide care for her decreased. There was a decision point that came late in the trajectory where we decided they needed to move in with me and my husband. The point is that aging caregivers are at risk for declining capacity, even if the care recipient’s needs remain the same. This may call for further assessment and intervention and is not often accounted for in caregiving planning. We have been fortunate to have a close family. When children and parents are not connected emotionally or when dysfuntion, for whatever reason, has damaged the family ties, it is not realistic to expect that caregiving will continue across generations. Mary Ellen Young, PhD, and Elizabeth “Lisa” Hannold, PhD University of Florida, College of Public Health and Health Professions (PHHP), VA Rehabilitation Outcomes Research Center Research Enhancement Award Program (RORC REAP), North Florida/South Georgia Veterans Health System, Gainesville, Florida Mary Ellen Young, PhD, and Elizabeth “Lisa” Hannold, PhD University of Florida, College of Public Health and Health Professions (PHHP), VA Rehabilitation Outcomes Research Center Research Enhancement Award Program (RORC REAP), North Florida/South Georgia Veterans Health System, Gainesville, Florida The Cultural Context of Caregiving: Perspectives of a Caregiver and a Care Recipient The Cultural Context of Caregiving: Perspectives of a Caregiver and a Care Recipient In the case of an adult, disabled child of aging parents who can no longer fulfill caregiving roles due to their own limitations, the care recipient may need to assume more responsibility. Managing one’s own disability and necessary resources is stressful and time-consuming. The added responsibility of coordinating services and supports for aging parents, and negotiating control over duties that parents are reluctant to relinquish, will add new time demands and stressors to the “care recipient’s” life. These added stressors and fatigue easily can affect the health and well-being of someone whose health status is already compromised by disability. In a culture like ours, where personal independence and self-sufficiency are expected with maturity, the need for assistance or care from others may be perceived as personal failure. Thus, simply accepting that fact that a person must rely on others to provide their care may prove to be challenging. For children and adults who require care, our society assumes that immediate family members are ethically responsible and, by default, will be willing, qualified, caregivers—regardless of cultural and economic considerations. Typically, there is no choice involved in the decision to provide care; especially if alternative support programs and funding sources are limited. In these cases, care recipients likewise have little or no choice in who provides their care—it is either family members or institutional care. Enter text here In a culture like ours, where personal independence and self-sufficiency are expected with maturity, the need for assistance or care from others may be perceived as personal failure. Thus, simply accepting that fact that a person must rely on others to provide their care may prove to be challenging. For children and adults who require care, our society assumes that immediate family members are ethically responsible and, by default, will be willing, qualified, caregivers—regardless of cultural and economic considerations. Typically, there is no choice involved in the decision to provide care; especially if alternative support programs and funding sources are limited. In these cases, care recipients likewise have little or no choice in who provides their care—it is either family members or institutional care. Enter text here Care Recipient Perspective Question 1 If adequate back-up plans are not in place, both situations could jeopardize the health and safety of care recipients, and ultimately result in institutionalization. Neglect has been documented in some case where family caregivers are paid to care for another family member. The existence of family ties between caregiver and care recipient does not negate the possibility of fraud or neglect; oversight is needed to ensure that the care recipient’s needs are being met. In cases where family relationships are not strong or mutually respectful, the need to rely on a family member to provide your care can be frustrating and detrimental to the care recipient’s physical and emotional health. For example, the care recipient may be reluctant to voice needs and concerns for fear of causing stress or resentment in the relationship. If adequate back-up plans are not in place, both situations could jeopardize the health and safety of care recipients, and ultimately result in institutionalization. Neglect has been documented in some case where family caregivers are paid to care for another family member. The existence of family ties between caregiver and care recipient does not negate the possibility of fraud or neglect; oversight is needed to ensure that the care recipient’s needs are being met. In cases where family relationships are not strong or mutually respectful, the need to rely on a family member to provide your care can be frustrating and detrimental to the care recipient’s physical and emotional health. For example, the care recipient may be reluctant to voice needs and concerns for fear of causing stress or resentment in the relationship. From a care recipient’s perspective, the US Health System does not offer many options to formalized care. When families no longer are able to provide informal care, few options exist to offer formal care in the home; especially in the absence of personal financial resources to cover costs. Families often feel guilty for having to resort to institutionalization, but they typically have no other options to care for their loved ones. Critical Questions on Caregiving and Receiving in the United States TABLE TITLE Love, respect and reciprocity are the values that compel each generation to care for the next. My parents cared for my grandmother, who had dementia, for 10 years. My father cared for my mother, who has MS, until his death last year. As his health worsened, I became primary caregiver for both. Caregiver Perspective Question 1 Both men and women in my family have been caregivers. Everyone steps up to help, my father, my brother, and my husband included. I do believe that men view caregiving differently and may perform certain tasks differently, but there is much sharing of responsibility. If I had to be a sole caregiver of someone with a substantial functional impairment, it would be a lonely, difficult challenge indeed. We are fortunate to have the resources to have paid caregiving, both for my work hours and for respite. Our paid caregivers are very responsive to our needs and work under our direction. However, our resources do have limits. I do believe that the contribution of unpaid caregivers is significantly undervalued in our society. Twelve years ago my husband and I decided to return to the place where our parents raised us so that we could take care of them. We were fortunate in being able to do so in terms of employment opportunities and other resources. I do not believe we would have been able to provide the care our loved ones needed via long distance. Long-distance caregiving may require more financial resources and the utilization of case managers who can arrange and monitor services more closely. I recognize that my capacity to provide care depends on my maintaining my physical as well as my mental health. Even in the best of circumstances, I don’t always follow guidelines for screening or attend to my health concerns in a timely manner. It is always a trade off and sometimes the more urgent needs of the care recipient take precedence. I can tell when I begin to experience “compassion fatigue” and need a break. I realize that the 24/7 nature of some caregiving, coupled with the physical demands of providing care in the light of functional limitations may take its toll over the years. My important insight includes recognizing my limitations, seeking out assistive technology when circumstances change and using respite without feeling guilt. Caregiver Perspective Question 2 Caregiver Perspective Question 3 Caregiver Perspective Question 7 Caregiver Perspective Question 6 Caregiver Perspective Question 5 Caregiver Perspective Question 4 Nursing homes provide a safety net for caregiving when other options become not feasible. Such was the decision that my husband and I had to make for his mother whose advanced dementia was beyond our capacity to deal with. The decision to place a loved one in a nursing home is emotionally difficult. Caregivers and care recipients need to be partners in this decision making to the extent possible and health professionals should be supportive of all parties at this very difficult time. Caregiver Perspective Question 8 Historically, women in our society have served as caregivers. Despite the evolution of women’s roles in the past century, society continues to rely on women to fulfill the roles of informal caregivers—regardless of work demands and other obligations. From a care-recipient’s viewpoint, paying caregivers, directly or indirectly, lessens the perception of being a “burden” because caregivers are receiving something in return for their effort. If state funding/reimbursement/benefits programs are not available for pay for formal caregiving within one’s home, the care recipient may have to fund services independently or rely only on unpaid caregivers to avoid entering an assisted living facility. These costs may be enormous. Few care recipients have the financial resources to fund caregiving costs independently (i.e. low employment rates among people with disabilities). Unpaid caregivers frequently have to give up full-time employment and benefits, or reduce from full to part-time employment status, in order to provide necessary care. This reduction in income can have devastating and prolonged financial consequences for a family. If the care-recipient also was a wage earner, the loss of two incomes can double the financial impact From a care-recipient’s viewpoint, paying caregivers, directly or indirectly, lessens the perception of being a “burden” because caregivers are receiving something in return for their effort. If state funding/reimbursement/benefits programs are not available for pay for formal caregiving within one’s home, the care recipient may have to fund services independently or rely only on unpaid caregivers to avoid entering an assisted living facility. These costs may be enormous. Few care recipients have the financial resources to fund caregiving costs independently (i.e. low employment rates among people with disabilities). Unpaid caregivers frequently have to give up full-time employment and benefits, or reduce from full to part-time employment status, in order to provide necessary care. This reduction in income can have devastating and prolonged financial consequences for a family. If the care-recipient also was a wage earner, the loss of two incomes can double the financial impact Caregivers need adequate, routine time away from their caregiving responsibilities to maintain their own health. In addition to routine respite care, it is critical to develop “back-up” and emergency caregiving plans and identify a pool of qualified and willing caregivers to take over caregiving duties. From a care recipient’s perspective, having a local safety net is critical. Care Recipient Perspective Question 7 Care Recipient Perspective Question 6 Care Recipient Perspective Question 8 Care Recipient Perspective Question 5 Care Recipient Perspective Question 4 Care Recipient Perspective Question 3 Care Recipient Perspective Question 2