Backgrounders

1. The Caregiver's Choice statistical studies reveal surprising insights into caregiving trends in the United States.

CAREGIVING ON THE INCREASE

Two recent studies of family caregiving in the United States reveal that many more adults than previously thought are giving care to family members, partners or friends. A 2000 survey conducted by R.H. Bruskin & Associates for the National Family Caregivers Association found that 26.6 percent of American adults, or about 54 million people, had provided care for an elderly, disabled or chronically ill friend or relative. This was twice the number of caregivers that had been estimated in previous studies.

A comparison by the National Alliance for Caregiving of surveys conducted by the American Association of Retired Persons in 1987 and 1997 found that the percentage of Americans acting as caregivers for elder relatives or friends had nearly tripled over the 10 year period, increasing from 7.8 percent of the population in 1987 to 22 percent in 1997. (This indicates a 278-percent increase in family caregivers, compared to only 21 percent increase in elderly population during the same period. [Source: "Comparative Analysis of Caregiver Data for Caregivers to the Elderly 1987 and 1997.]

CURRENT TRENDS The National Alliance for Caregiving comparison suggests the following implications and trends: Caregiving for an elder has become a "normative" experience for US families an experience that is touching more households today than in the past. In the future, we can expect to see more caregivers in the workforce. Workplace issues for employed caregivers are likely to increase in the future. As more employed persons become involved in caregiving, we may expect an increase in male caregivers. We can anticipate a reduction in co-residence households, as the trend is for fewer care recipients to live in the same home with caregivers, and more to live in their own homes or apartments within 20 minutes' drive of the caregiver's home.

WHO ARE CAREGIVERS AND CARE RECIPIENTS? The 1997 AARP survey showed that:

• The largest number of care recipients were the caregivers' mothers (31%) as many as fathers, in-laws and grandparents combined.
• Fifteen percent of care recipients were non-relatives.
• More than one in five caregivers (22.4%, or more than five million households) took care of someone with Alzheimer's disease, confusion, dementia or forgetfulness.
• Other common illnesses or problems included "aging (15.5%), mobility problems (10.4%), heart conditions (9.6%), cancer (8.6%) and strokes (7.8%).
• About 48 percent of caregivers spent eight hours a week or less in caregiving duties, while 25 percent spent 20 hours a week or more.
• The average caregiver spent 18 hours a week.
• The most common types of caregiving help provided included transportation, grocery shopping, housework, meal preparation and managing finances.
• Duties of caregivers who spent more than 20 hours a week often included dressing, bathing, toileting and moving the care recipient from one place to another.
• The median age of care recipients was 77 years.
• Among caregivers 71 percent were between the ages of 35 and 64.

DIFFICULTIES AND REWARDS

The biggest difficulties caregivers experienced were demands on their time, not being able to do what they want, and watching or worrying about their care recipient's deterioration.

The biggest rewards cited by caregivers included assurance that the care recipient is well cared for, personal satisfaction in doing good deeds, and the care recipient's appreciation or happiness.

EFFECTS ON CAREGIVER'S EMPLOYMENT

The 1997 AARP survey found that the majority of caregivers were employed (64%), most of them full-time (52%). These figures represented a 24-percent increase since the 1987 survey. The main effect on the caregiver's employment was an increase in the incidence of late arrivals at work, early departures and days off.

In a November 1999 study conducted by the Metropolitan Life Insurance Company "The MetLife Juggling Act Study." Researchers found that: 29 percent of family caregivers passed up a job promotion, training or assignment because of their caregiving responsibilities. 25 percent passed up an opportunity for job transfer or relocation, 22 percent were not able to acquire new job skills, and 13 percent were not able to keep up with changes in necessary job skills. 64 percent used sick days or vacation time for caregiving, 33 percent cut back their hours (20% to part-time status), 29 percent spent evenings or weekends making up for missed work. 38 percent found it necessary to take a leave of absence or quit their jobs.

Based on these findings, the MetLife study recommended that: employers develop ways to offer flexible benefits such as flextime, telecommuting, job-sharing, and compressed work weeks; employers offer long-term care insurance programs; communities develop or sponsor programs such as respite, adult day care and caregiver support groups, as well as information, referral and educational programs; and federal, state and local governments create a more favorable tax environment for caregivers and their employers.


2. Strategies for Coping with Caregiver Stress

"While [family caregiving] can be a rewarding experience, it's also demanding and exhausting, says Pauline Salvucci, who coaches family caregivers across the nation from her home in Cape Elizabeth, Maine. While this can be a rewarding experience, it's also demanding and exhausting. "You're required to see with a comprehensive vision that asks much of you. In the attempt to do your best, you may learn to be an excellent juggler, but pay a high price for keeping all the balls in the air. Taking care of yourself is a necessity."

Here is a sampling of the many tips for avoiding caregiver burnout that Salvucci offers in her publications and teleclasses and on her Web site,

www.SelfCareConnection.com

• Live in the present. The future has not happened, the past cannot be undone. You can learn from the past, but you can only live in the present.
• Be spontaneous. Make a list of 5-10 relaxing things to do. Don't include any work tasks or chores on your list. Choose one of these activities to do each week.
• Say "I want" not "I should." Beware of "should thinking."
• Keep a gratitude journal. A habit of acknowledging what you're grateful for helps you to be open to life and its gifts and possibilities.
• Create a self-care contract. Begin with just a few self-care goals. Make your goals part of your routine by determining concrete steps to achieve them.
• Relax your mind. A relaxed mind will help you focus and better use these tips. Your mind clears as you shift and refocus your attention.
• Inform your partner, family and friends. Let them know you've made the important decision to practice self-care. Expect times when what others want from you will conflict with your decision to care for yourself. Be prepared to maintain your self-care intention. This means saying no and meaning it.
• Create strong boundaries. Make them clear and direct. Write what you will say to others who violate them. Practice delivering your message out loud.
• Examine your dependence on others. Do you lean heavily on the responses of others to determine how you feel about yourself? To develop independence, choose a goal you would like to accomplish. When you follow through with one goal, you realize you can accomplish others.
• Celebrate your freedom. Releasing yourself from guilt is a tough challenge, so acknowledge your progress. As you become free, reward yourself and ask someone to celebrate with you.

4. Caregiving Goes Mainstream

At a time when many baby boomers and former flower children are finding themselves cast in the role of caregiver, the demands and rewards of care-giving are coming to public attention through books, television and movies as never before.

Baba Ram Dass first came to public awareness with Richard Alpert, a Harvard psychology professor who was fired in 1963 for experimenting with psychedelic drugs along with his colleague, the late Timothy Leary. He then traveled to India, where he studied Eastern mysticism and was renamed Ram Dass ("Servant of God"). He described his transformation from "neurotic Jewish overachiever to white-robed yogi" in his bestselling Be Here Now, one of the most important influences on the philosophical and spiritual growth of the Sixties counterculture movement.

Later, in the 1980s, Ram Dass dropped out of the public eye to work quietly in various kinds of selfless service to others, foremost of which was setting up hospices for and working with people who faced death because of cancer, AIDS or other illnesses. In the 1990's he returned home to spend time caring for his elderly father during his last interest. He had been estranged from his father, former New York, New Haven & Hartford Railroad president George Alpert, for 25 years since being dismissed from the Harvard faculty and changing his name. Afterward, Ram Dass helped care for his old friend, Timothy Leary during Leary's bout with terminal prostate cancer. Their last weeks together were the subject of a 1996 film.

In a June 1997 appearance before a capacity crowd in Santa Fe, New Mexico, to benefit victims of the forest fire that destroyed the Lama Foundation, which he had helped found, Ram Dass announced that he had completed writing a new book called Still Here based on his experiences with the hospices, his father and Leary.

But a few weeks later his editor returned the manuscript to him, calling it "too glib funny and interesting but not really getting to the heart of the matter." The same day, he suffered a stroke so massive that doctors believed he probably would not survive, leaving him paralyzed and unable to speak.

Ram Dass did survive, and gradually recovered some ability to speak and to move one side of his body. Hundreds of supporters, who used the Internet to organize a caregiving group for him, came from all parts of the country to provide day-to-day help, and thousands of others have donated financial support at fundraisers, where Ram Dass sits satsung with them. (Satsung is a form of meditation from India in which a spiritual leader sits before with an audience, often for hours at a time.) He completed revising Still Here, his own experiences providing the depth of insight that had been lacking, and the book became a bestseller, his most successful work since Be Here Now almost 30 years earlier.

Ram Dass's experiences first as caregiver and then as care recipient offer a striking example of karma, an Eastern concept that he had been among the first to introduce to Americans.

[Still Here: Embracing Aging, Change and Death, Ram Dass, Putnam Publishing, May 2000. For more about Ram Dass and his stroke: "The Dass Effect" by Sara Davidson, www.newfrontier.com/2/Ram_Dass.htm]

Other public figures who have brought caregiving into the public consciousness include NANCY REAGAN whose role as caregiver for her husband, former president Ronald Reagan, since he was diagnosed with Alzheimer's Disease in 1994. In conversation with an interviewer for the Alzheimer's Association a year later, Nancy Reagan was asked, "What would you say to all those who are grappling with this disease as a patient or a caregiver?" Her reply: "Don't ever lose hope. Even when life seems bleak and hopeless, know that you are not alone."

Interviewed by CNN's Larry King on Ronald's 91st birthday (Feb. 6, 2001), Nancy Reagan was asked what the toughest part was for Alzheimer's caregivers. She said, "It - it's sad to see somebody you love and have been married to for so long and you can't share memories." That's the sad part.

KIRK DOUGLAS also focuses public attention on caregiving in his new book, My Stroke of Luck (HarperCollins, 2002). The 85-year-old actor credits the support of his wife of 48 years, Anne, for his survival following his 1995 stroke and the near-suicidal depression that came afterward. Other family members also helped him discover that there can be life after a massive stroke. When Douglas was given a Lifetime Achievement Award at the 1996 Academy Awards, he wanted his son Michael to accept it for him, but Michael refused, using "tough love" to force Kirk to rehearse his simple nine-word acceptance speech 150 times a day: "Thank you. Thank you very much. I love you."

In his second motion picture since the stroke, Kirk Douglas will co-star for the first time after his disability. Two major motion pictures that received Academy Award nominations in 2002 depict the demands and rewards experienced by caregivers. Jennifer Connelly was nominated for "Best Actress in a Supporting Role" for her portrayal in A Beautiful Mind of Alicia Nash, who cared for her husband, mathematician John Nash, through his decades-long struggle with schizophrenia. And Jim Broadbent was nominated for "Best Actor in a Supporting Role" for his portrayal in Iris of John Bayley, who cared for his wife, British novelist Iris Murdoch, during her descent into Alzheimer's disease. www.oscars.com