Family Caregivers and Alzheimer’s Disease
By John Schall
When Alzheimer’s strikes, it does not just affect the patient. The disease invades the lives and homes of families and friends who must provide ever-increasing amounts of care. While any caregiving situation can be stressful, caring for a loved one with Alzheimer’s is a particularly daunting task. Problems with memory, thinking, and behavior — that eventually become severe enough to affect work, lifelong hobbies, and social life — make Alzheimer’s disease an especially challenging scenario for family caregivers.
The Nation Owes a Debt to Family Caregiver
There are an estimated 15.2 million Americans caring for 5.4 million loved ones with Alzheimer’s. The number of family caregivers is growing rapidly due to the rise in the number of Alzheimer’s cases and the aging population. In fact, the number of Alzheimer’s family caregivers is one of the main factors driving up the nation’s overall number of family caregivers — now at 90 million Americans.
Family caregivers of loved ones with Alzheimer’s are doing most of the heavy lifting. They provide 17.4 billion hours of unpaid care each year. Economists estimate the economic value of that unpaid care at $210 billion each year.
No doubt about it: family, friends, partners, and neighbors are providing the bulk of the nation’s Alzheimer’s care. Eighty percent of at-home care for people with Alzheimer’s or other dementias is provided by family caregivers.
Who are these Family Caregivers?
The Caregiver Action Network and Forest Laboratories conducted the Alzheimer’s Disease Family Caregiver Survey to take a look at exactly who these Alzheimer’s family caregivers are and find out what challenges they face. The survey showed that the “average” Alzheimer’s family caregiver is a married 52-year-old woman caring for a parent or in-law for more than four years.
But the survey also revealed some surprising statistics about Alzheimer’s caregivers. For instance, there are 1 million younger Americans (between ages 18 and 29) who are family caregivers and mostly care for grandparents with Alzheimer’s disease.
The amount of time spent caregiving is enormous. On average, the most involved family caregivers of Alzheimer’s patients spend 43 percent of their time providing care! Most of them already have full- or part-time jobs besides providing many hours of care, leaving them very little spare time. No wonder so many caregivers report neglecting other aspects of their lives as a result of their caregiving responsibilities. According to the survey, 46 percent stay home from school or jobs to provide care; 52 percent skip exercising or going to the gym; and 65 percent neglect other personal and family obligations.
Challenges for Caregivers
What is most striking about the challenges that Alzheimer’s family caregivers face is how similar they are despite gender, ethnic, and age differences among the caregivers. Caregiver Action Network’s online video series paints a picture of the common experiences of America’s diverse Alzheimer’s disease family caregivers. The video series is a collection of actual Alzheimer’s family caregivers discussing their real-world experiences. The caregivers in the video series reveal intimate feelings and raw emotions as they share their common struggles and stresses.
The caregivers’ shared experiences reveal several key insights. First of all, caregiving can be lonely: one of the most common feelings that caregivers report is isolation. A majority (61%) of family caregivers rate their level of emotional stress as high or very high.
Secondly, the vast majority of Alzheimer’s family caregivers worry about their own health as well as the health of their loved one. Three out of four (75%) of those family caregivers are concerned about maintaining their own health.
And third, communication breakdowns are a major challenge. Across all demographics, the loss of their loved one’s ability to communicate was ranked second among what frightens caregivers the most (only behind general health and physical capabilities). Nearly half (49%) said communication breakdowns between them and the patient greatly affect their own overall stress level. And sadly, that is causing the majority (54%) of caregivers to decrease their attempts to engage in conversations with their loved one!
All told, Alzheimer’s family caregivers are facing common challenges. The majority of caregivers are not getting the stress relief they need from their support networks, and many are seeking information on how to be a more effective caregiver and how they can better communicate with family and friends about the patient.
Often, family caregivers need to seek outside help to meet their caregiving challenges. The family caregiver usually makes the decisions on whether assistance is needed for the short term or the long term, and whether the assistance needed is for a home care aide or a registered nurse. Family caregivers must evaluate whether their loved one with Alzheimer’s needs medical, nursing, social, or therapeutic treatment and/or assistance with the essential activities of daily living. But most family caregivers are unfamiliar with how to sort out the differing levels of need. For example, do you need a nurse to clean and bandage wounds and monitor equipment? Or a home care aide to help your loved one get showered and dressed? Or would a companion/homemaker be more appropriate in your situation?
Help for Caregivers
The Caregiver Action Network’s online Alzheimer’s video series explores different topics with family caregivers. Topics include: Discovering Alzheimer’s Disease, Life as a Caregiver, Caregiver Tactics, and Finding Support. Caregivers can watch videos that discuss the signs and symptoms of Alzheimer’s disease, how loved ones hide their symptoms, and helpful tips for family caregivers after the diagnosis. In the video section on Life as a Caregiver, caregivers share tips for getting through from day to day and provide some inspiring swords of wisdom. Other videos talk about how caregivers can come to terms with this overwhelming experience and also provide insights on how to make the decision to seek long-term care.
Caregivers can find the Alzheimer’s video series and more information on how to communicate with their loved ones and others involved in the patient’s care at www.caregiveraction.org. Some tips for family caregivers (or professionals giving advice to family caregivers) include:
About Caregiver Action Network
The Caregiver Action Network is the nation’s leading family caregiver organization working to improve the quality of life for the more than 90 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. CAN serves a broad spectrum of family caregivers ranging from the parents of children with special needs, to the families and friends of wounded soldiers, from a young couple dealing with a diagnosis of MS, to adult children caring for parents with Alzheimer’s disease. CAN (formerly the National Family Caregivers Association) is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge. To learn more, visit www.caregiveraction.org.
About the Author: John Schall is a public policy and communications professional with noted expertise in a wide range of policy fields, including healthcare, labor, education, economic development, taxation, and budget policy. He became Chief Executive Officer of the Caregiver Action Network (formerly the National Family Caregivers Association (NFCA)) in June 2012. Prior to CAN, Mr. Schall was Deputy CEO of the Parkinson’s Action Network.
John also brings to CAN a wealth of experience in senior federal government positions,including serving as former Sen. Bob Dole’s chief budget advisor; chief of staff of the U.S. Department of Labor in the early 1990s; and as deputy of the White House Domestic Policy Council under President George H.W. Bush. He holds a Master of Public Policy degree from Harvard University’s John F. Kennedy School of Government, and is a graduate of the University of Michigan.