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Posted: May 11, 2006

Spousal Caregiving

You Are NOT Alone!

Bill Andrew

As a caregiver, I am sure that many times you feel as if you are all alone in this world -- especially when the going gets really tough. I know -- I have felt that way myself after almost 12 years of caregiving for my wife, Carol, who has late-stage Alzheimer's disease. 
 
First go the friends, then the neighbors, then the family. And finally, you may think of yourself as being all alone on your spousal caregiving journey.
 
But have you ever thought about the many other family caregivers out there who are going through much of what you and I are encountering? These are family caregivers for their spouses, parents, siblings, children, or friends. Their care-recipients are chronically ill, disabled, or aged -- folks who desperately need assistance from a loved one. It has been estimated that 80% of this care is provided by family members in the home of the care-recipient.
 
The National Family Caregivers Association website provides a wealth of information for family caregivers -- including spousal caregivers. I came across the following statistics on this website and wanted to share them with you. The bottom line: YOU ARE NOT ALONE!
 
DID YOU KNOW . . .

Caregiving Population
  • More than 50 million people, provide care for a chronically ill, disabled or aged family member or friend during any given year.
  • Caregiving is no longer predominantly a women's issue. Men now make up 44% of the caregiving population.
  • Caregivers providing care for a family member over the age of 50 routinely underestimate the length of time they will spend as caregivers . . . only 46% expected to be caregivers longer than two years. In fact, the average length of time spent on caregiving was about eight years, with approximately one third of respondents providing care for 10 years or more.
  • Most women will spend 17 years caring for children and 18 years helping an elderly parent.
Economics of Caregiving
  • The value of the services family caregivers provide for "free" is estimated to be $257 billion a year. That is twice as much as is actually spent on home care and nursing home services.
  • Caregiving families tend to have lower incomes than non-caregiving families. Thirty-five percent of average American households have incomes of under $30,000. Among caregiving families the percentage is 43%.
  • Of the estimated 2.5 million Americans who need assistive technology such as wheelchairs, 61% can't afford it.
  • Out-of-pocket medical expenses for a family that has a disabled member who needs help with activities of daily living (eating, toileting, etc.) are more than 2½ times greater (11.2% of income compared to 4.1%) than for a family without a disabled member.
Impact of Caregiving
  • Elderly spousal caregivers with a history of chronic illness themselves who are experiencing caregiving related stress have a 63% higher mortality rate than their non-caregiving peers.
  • 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.
  • Family caregivers who provide care 36 or more hours weekly are more likely than non-caregivers to experience symptoms of depression or anxiety. For spouses the rate is six times higher; for those caring for a parent the rate is twice as high.
  • Family caregivers providing high levels of care have a 51% incidence of sleeplessness and a 41% incidence of back pain.
 Caregiving and Work
  • Thirty-seven percent of employees don't believe that their organizations provide a real and ongoing effort to inform employees of the family-friendly programs that are available.
  • Forty-two percent of parents of special needs children lack basic workplace supports, such as paid sick leave and vacation time.
  • Women average 11.5 years out of the paid labor force, primarily because of caregiving responsibilities; men average 1.3 years.
  • American businesses lose between $11 billion and $29 billion each year due to employees' need to care for loved ones 50 years of age and older.
  • Both male and female children of aging parents make changes at work in order to accommodate caregiving responsibilities. Both have modified their schedules (men 54%, women 56%). Both have come in late and/or leave early (men 78%, women 84%) and both have altered their work-related travel (men 38%, women 27%).
 Caregiving and Healthcare
  • More than 40% of U.S. primary care physicians think they don't have enough time to spend with patients.
  • Family caregivers provide the overwhelming majority of home care services in the United States, approximately 80%.
  • In 2000, 50% of caregivers reported that different providers gave different diagnoses for the same set of symptoms, and 62% reported that different providers gave other conflicting information. Another recent survey found that 44% of physicians believe that poor care coordination leads to unnecessary hospitalization, and 24% stated it can lead to otherwise unnecessary nursing home stays.
  • By the year 2030, nearly 150 million Americans will have some type of chronic illness, a 50% increase since 1995.
  • Family caregivers who acknowledge their role are more proactive in reaching out for resources and talking with their loved one's doctor than non-acknowledged caregivers.
  • More than 40% of family caregivers provide some type of "nursing care" for their loved ones, such as giving medications, changing bandages, managing machinery and monitoring vital signs.
  • One-third of family caregivers, who change dressings and manage machines, receive no instructions.
These caregiving statistics were published on the web site of the National Family Caregivers Association as of May 2, 2006. These statistics were compiled from a wide range of sources. To determine the original source for each statement or group of statements, go to the association’s website and search for "caregiving statistics." 
 
Note: Survey statistics sometimes seem to contradict each other. That's because each study or survey has its own methodology, its own set of variables, data sources, etc. It doesn't mean one is right and the other wrong. It does mean that you need to understand how the survey was developed and constructed in order to put the statistic into context.
 
I don't know about you, but these statistics impressed me -- so much so that I am using them as a handout for a major family caregiver summit that I am coordinating. Remember, fellow caregiver -- YOU ARE NOT ALONE!
 
You may have had occasion to be one of these or similar statistics and would like to share them with our readers. If so, e-mail me at ASKBill@caregivershome.com
 
WORDS TO CARE BY . . .
 
"There are three kinds of lies: lies, damned lies, and statistics."
 
Benjamin Disraeli (1804-81)


Bill Andrew identifies himself as a former “nutritionally-empowered Alzheimer’s caregiver” who attributes the slow-down in progression of Alzheimer’s disease in his wife, Carol – and the growth of his own personal emotional, mental, physical, and spiritual capability and strength to provide quality 24/7 care for her in their own home – to the targeted nutritional supplements they both took on a daily basis. Carol went to her Heavenly reward on June 9, 2008 – Bill continues on to advocate for family caregivers. Contact Bill with your caregiving questions and comments via email at ASKBill@caregivershome.com.

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