Family caregiving today is more complex, costly, stressful, and demanding than at any time in human history” (Reinhard, Feinberg, Choula, & Houser, 2015)
Overview
The impact on family caregivers’ health and well-being while caring for loved ones with dementia, can be significant. Physiological, psychological, social, and a variety of other such factors are frequently experienced by family members caring for individuals with various types of dementia. Generally speaking, any form of caregiving, not just for dementia patients, can be considered detrimental to a caregiver’s health.
Changes in psychological and physical conditions can include, among other ailments, stress, depressed immune systems, heart disease, and even premature death. In fact, caregivers have presented as secondary patients to healthcare professionals as a result of the stress incurred while caring for family members afflicted with Alzheimer's disease. Cortisol levels have been shown to increase in caregivers, leading to impaired cognitive functions as well as other metabolic disorders.
Social workers have been concerned about the phenomenon of family caregivers for years. The National Alliance for Caregiving, American Association of Retired Persons (AARP), American Psychological Association (APA), and the National Cancer Institute are among many agencies that express concern about family caregivers and offer support and advice for caregivers.
Termed "caregiver burden", caregivers often feel their demands outweigh available resources. An important phenomenon known as familial stigma has emerged leading to increased levels of burden felt by caregivers. Caregivers can feel ostracized from social circles as other family and friends may distance themselves from the recipient as well as the caregiver. It is also important to remember that caregivers of Alzheimer's patients spent considerably more time caregiving than caregivers of recipients with other general illnesses or disabilities. In many of these cases, caregiving continues even after the recipient was admitted to a healthcare facility.
According to the National Family Caregivers Association (NFCA), more than 65 million family caregivers in the United States care for an aging or chronically ill parent, partner, or relative. These caregivers provide assistance with basic daily activities, like dressing, eating, bathing, and household chores, as well as coordinating transportation, finances, and medical care. Some family caregivers provide care for one or both parents, while others care for family members who are critically or terminally ill, or who have special needs. Surveys show that two-thirds of caregivers are women and the average age is 48. Family caregivers spend about 20 hours per week providing care on average, and 13 percent of family caregivers provide more than 40 hours per week.
Although caring for a loved one can be rewarding, it can also be extremely stressful to the caregiver. Most caregivers step into the role with very little preparation and minimal outside assistance. Caregivers who lack adequate support often suffer from their own physical and mental issues. Providing care in addition to fulfilling other responsibilities can leave caregivers feeling isolated and exhausted and over time they may suffer from burnout and depression, among other ailments related to caring for loved ones.
One of the most pressing needs for caregivers is the opportunity to take some time off. Finances are also a major concern for many family caregivers. Many are concerned about paying their bills including medical costs which continue to rise. At the same time, they may feel that their job is at risk because of the time and energy that being a caregiver requires.
The nearly 66 million unpaid caregivers are the largest source of long-term care in the United States. This burden will continue to grow and the number of caregivers is expected to rise as the population continues to grow older. There has not been enough research to thoroughly analyze the psychosocial impact of caregiving of working and managing caregiving. Caregiving takes time away from other important social interactions and familial responsibilities. Caregivers report coming late to work, having to leave early, take leaves of absences, reduce work hours, quit working or retire early. Each situation impacts earning power and can lead to emotional distress as a result. 60% of family caregivers in 2014 were employed and 40% were aged 50 and over.
From a social justice perspective, many families, friends, and other caregivers provide care and support at significant cost to their own physical, emotional, and financial well-being. These individuals or groups of caregivers provide this care without pay and put their careers and family life at risk. Interdependencies between caregivers and recipients frequently develop and in many cases, the death or incapacity of the caregiver can result in a traumatic impact on recipients. It is difficult to find caregivers who know and understand the recipient better than the family member did. Although the impact on family caregivers can be significant, the economic costs of paying caregivers to provide similar services would greatly increase healthcare costs overall.
According to the National Institute on Aging in 2015, caregivers experienced additional stress, heightened anxiety, and increased risk of depression among many emotional/mental health issues as a result of demands placed on their responsibilities in caring for others. Family caregivers are frequently at a loss understanding what a caregiving role includes and as a result are very vulnerable to the experiences described above as a result.
The importance of identifying and describing these challenges to working adults is the focus here as well as discussing shared responsibilities in helping employees and organizations deal with the caregiving issue.
More to come in Caregiving 102...
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