Always on-call: the health of informal caregivers for seniors. (Opinion).

Providing care to a family member or friend can involve a progressive increase in care responsibilities over a period of years while the caregiver continues to fulfill the demands of employment, meet their own personal needs and those of other family members. The impact of caregiving can hold serious consequences for a caregiver's physical and psychological health. To examine the nature of this impact, we asked informal caregivers of seniors to share their experiences of caregiving and to discuss the factors that affected their health and their ability to manage caregiving along with their paid work and other responsibilities. We used several methods. The summary presented here addresses findings from focus groups and interviews with 30 informal caregivers and a workshop with community service providers that were conducted in Winnipeg in 2000.

People were considered caregivers if they assisted a family member or friend over the age of 65 with everyday activities such as preparing meals, shopping, bathing or transportation. Twenty-four of the 30 caregivers were female. Of the 30 caregivers, 14 were spouses, 13 were adult children, two were other relatives, and one was a friend. Twenty-five of the caregivers were providing care to one older adult, and five were caring for two older individuals. Thirteen of the older adults had some form of cognitive impairment. None of the caregivers received any direct financial reimbursement for providing care.

Five broad themes emerged from the discussions. The first had to do with the impact of caregiving on health. Fourteen of the 30 caregivers stated that their health worsened during the caregiving period. They identified both physical and emotional symptoms as responses to the older adult's behavior or care needs. The symptoms included sleeplessness, crying episodes and fatigue. One woman, who cared for her husband who has cognitive impairment, said, "I get these crying jags, and that's why I thought maybe things were getting a little hard for me." Another woman who was employed part-time and also cared for her mother who has Alzheimer's disease said, "I was so exhausted for a couple of years that I would come home and go to bed at 6:00 at night and get up in the morning at 6:00 -- twelve hours."

Caregivers who identified psychological problems indicated that caregiving was one contributing factor operating in conjunction with other life events. They stated that they felt an unending responsibility for their family member or friend. This sense of responsibility never left them, even when a hired worker remained with the older adult while they were absent. "I can never quite get them out of my mind," one caregiver said. "I'm always kind of on-call for them."

A second theme emerged when several caregivers described how caregiving took a toll on their friendships and their relationships with others. "It's a gradual isolation," one woman said. "Your life and part of your activities and part of who you are get dropped one by one." Others noted that, over time, friends displayed reluctance to contact them, and the caregivers themselves stopped phoning or going out with friends. A married caregiver caring for her parents said, "We must arrange our lives to ensure someone who can be trusted is with my parents. My husband and I...we never went on a holiday for three years."

In most cases at least one family member lived near the caregiver or could be reached by telephone for advice or help. This assistance, however, was not necessarily considered to be helpful. In some cases a mutually-agreed-upon plan for task-sharing was present. Other caregivers did not expect other family members, such as children or grandchildren, to assist them. Those who had sole responsibility for caregiving often expressed frustration and fatigue.

The senior's desire for independence despite cognitive and functional limitations represented a third theme and a specific challenge for some caregivers. So, under protest, she got a walker," one daughter said. "It's sitting folded up behind her TV, covered with a blanket. She also refuses to use a cane." One caregiver noted how her parents said they were fine even when she observed their failing health. "I came to the conclusion they were so terrified of being separated they would cover up for each other."

Eleven of the 30 caregivers were employed. This fourth theme carried a number of meanings: employment was seen as a resource by some, while for others it was a double bind. Nine of the 11 caregivers enjoyed their work and found it provided relief from their caregiving responsibilities. Three caregivers perceived their primary role as providing care to their family member and had modified their employment in order to do so. For these caregivers, the number of hours they spent giving care prevented them from working full-time, which resulted in financial difficulties.

Many of the participants in the focus groups said that programs and services for caregivers were limited in availability, difficult to discover and obtain, and that community service providers often excluded them from assessment and planning. Many stated they were not aware of the services that were available. When they did use services, they were frustrated by frequent changes of staff, lack of staff knowledge about the care recipient's health, inadequately-trained staff and inconsistent performance by care providers. One woman summed up the fifth broad theme of the study findings when she said, "My biggest problem with my folks has not been my folks, it has been home care. They used to send me six different people in a week."

In contrast, several caregivers spoke of the relief they felt when the home care services were of good quality: "When [name of worker] was there and I came home, I felt so relaxed because...there wasn't a thing I could see that I had to do, and it was so good."

The issues raised by the informal caregivers were discussed at a workshop with 31 community service providers from 22 agencies. The representatives explored the barriers and challenges to providing support and devised strategies to address the gaps in services that had been raised by caregivers. Based on the workshop, the interviews and focus groups, it is clear that greater awareness of the availability of support services to informal caregivers and seniors is needed. Both informal caregivers and seniors should be supported by these services. Inviting informal caregivers to collaborate in the assessment and planning process, along with seniors and community service providers, would enhance understanding of caregiving issues and help devise innovative strategies to deal with them.

RELATED ARTICLE: Ten Tips for Family Caregivers 

* Choose to take charge of your life, and don't let your loved one's illness or disability always take center stage.

* Remember to be good to yourself. Love, honor and value yourself. You're doing a very hard job, and you deserve some quality time, just for you.

* Watch out for signs of depression, and don't delay in getting professional help when you need it.

* When people offer to help, accept the offer, and suggest specific things that they can do.

* Educate yourself about your loved one's condition. Information is empowering.

* There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.

* Trust your instincts. Most of the time they'll lead you in the right direction.

* Grieve for your losses, and then allow yourself to dream new dreams.

* Stand up for your rights as a caregiver and a citizen.

* Seek support from other caregivers. There is great strength in knowing you are not alone.

Reprinted with permission from the National Family Caregivers Association website: http://www.nfcacares

Caregiver Self-Advocacy: Four Messages to Live By

What does it mean to be a happy person when you are a family caregiver? How can you gain a feeling of confidence in your abilities and have a sense of pride in your achievements? How do you stand up for yourself, take care of yourself and find a balance between your own needs and those of your loved ones? These are heady questions, and ones that we have discussed often at the National Family Caregivers Association.

We've looked for answers in our own experiences, in books, from professionals, and from other caregivers. We've struggled with these issues because they are at the core of our search for meaning and our need to have principles to live by as caregivers. We've now given form to the many ideas we have developed, and we want to share them with you. We call them NFCA's Principles of Caregiver Empowerment. They are the fundamental principles by which we try to live, and we hope you will use them as guideposts in your search for a sense of direction and inner peace.

1. Choose to take charge of your life. Don't let your loved one's illness or disability always take center stage.

We fall into caregiving often because of an unexpected event, but somewhere along the line you need to step back and consciously say, "I choose to take on this caregiving role." It goes a long way toward eliminating the feeling of being a victim.

2. Honor, value and love yourself. You're doing a very hard job and you deserve some quality time, just for you. Self-care isn't a luxury. It's a necessity.

Self care isn't a luxury. It is your right as a human being. Step back and recognize lust how extraordinary you are, and remember your own good health is the very best present you can give your loved one.

3. Seek, accept and at times demand help. Don't be ashamed to ask for help. When people offer assistance, accept it, and suggest specific things that they can do.

Caregiving, especially at its most intense levels, is definitely more than a one person job. Asking for help is a sign of your strength and an acknowledgment of your abilities and your limitations.

4. Stand up and be counted. Stand up for your rights as a caregiver and a citizen.

Recognize that care giving comes on top of being a parent, a child, a spouse. Honor your caregiving role, and speak up for your well-deserved recognition and rights. Become your own advocate, both within your own immediate caregiving sphere and beyond.

* Reprinted with permission from the National Family Care givers Association website: http://www.nfcacares

Elderly caregivers with a history of chronic illness themselves who are experiencing caregiving-related stress have a 63% higher mortality rate than their noncaregiving peers.

Source: Journal of the American Medical Association, December 15, 1999, Vol. 282, No. 23.

Sixty-one percent (61%) of "intense" family caregivers (those providing at least 21 hours of care a week) have suffered from depression. Some studies have shown that caregiver stress inhibits healing.

Source: National Family Care givers Association/Fortis Long Term Care (Caregiving Across the Life Cycle) 1998; Lancet 1995;346 (Slowing of Wound Healing by Psychological Stress - Kiecolt-Glaser, JK et al).

Heavy duty caregivers, especially spousal caregivers, do not get consistent help from other family members. One study has shown that as many as three-fourths of these caregivers are "going it alone."

Source: Caregiving Across the Life Cycle, op. cit.

Pamela Hawranik is an Associate Professor at the Faculty of Nursing and Centre on Aging at the University of Manitoba. Laurel A. Strain is a Professor at the Faculty of Arts and Director of the Centre on Aging. The following excerpt is reprinted from the Centres of Excellence for Women's Health Research Bulletin, vol. 3, no. 1, Spring 2002. For more information about this interesting publication, visit the website of the Canadian Women's Health Network: www.cwhn.ca or contact the CEWH, e-mail: [e-mail]. For a full copy of the report, Health of In formal Care givers: Effects of Gender, Employment and Use of Home Care Services, contact the Prairie Women's Health Centre of Excellence, 56 The Promenade, Winnipeg, MB, Canada R3B 3H9; fax: [phone]; website: www.pwhce.ca.