A Practical Guide to Caring for Caregivers

SUSAN MOCKUS PARKS, M.D., and KAREN D. NOVIELLI, M.D. Thomas Jefferson University Hospital, Philadelphia, Pennsylvania
A patient information handout on coping tips for caregivers, written by the authors of this article, is provided on page 2621.

Patients who provide care to family members or friends with dementia are likely to be in a family physician's practice. The caregiver role can be stressful, and identifying these patients can give the family physician opportunities to help patients cope with the challenges of the caregiver role. Family physicians have a systematic approach for assessing the degree of caregiver burden in these patients. Because caregivers are at increased risk for depression and anxiety, screening should be done to exclude the presence of either disorder. The caregiver's skill in managing behavioral problems in the family member with dementia should be assessed. If there are problems, family physicians should provide practical counseling about common caregiving stresses and about resources that benefit caregivers. Helping the caregiver learn strategies for coping with difficulties may help reduce some of the stress the caregiver is experiencing. (Am Fam Physician 2000;62:2613-20,2621-2.) See editorial on page 2584.

By the year 2030, an estimated 20 percent of the U.S. population will be 65

years or older.1 As the American population ages, a growing number of people will be serving as caregivers for family members affected by dementia and other types of functional impairment. Dementia is present in 10 percent of individuals older than 65 years and in 47 percent of those older than 85 years.2 As many as 80 percent of persons with dementia are cared for in their homes by family members.3 In day-to-day practice, family physicians are likely to see patients who serve as caregivers. In fact, one study of patients in a family practice demonstrated that 21 percent of the patients had caregiving responsibilities for persons with chronic medical conditions.4 Caring for someone with dementia is associated with a higher level of stress than caring for someone with functional impairment from another type of chronic illness.5 One survey revealed that persons with Alzheimer's disease required an average of 70 hours of care per week, with 62 of those hours provided by the primary caregiver. By 1990 dollar amounts, it was calculated that a caregiver provided $34,517 of care annually.6 While the issues faced by caregivers of patients with dementia are emphasized in this article, the basic principles apply to other illnesses as well. Knowledge of these principles can help family physicians teach their patients who are caregivers new coping strategies and make appropriate interventions for those caregivers who are overwhelmed.

As many as 80 percent of patients with dementia are cared for in the home by family members.

Caregiver Burden

Caregiver burden is an all-encompassing term used to describe the physical, emotional and financial toll of providing care.7 Numerous questionnaires have been developed to quantify the largely subjective domain of caregiver burden, but the Zarit Burden Interview is the most widely referenced scale in studies of caregiver burden (Figure 1).8

The Zarit Burden Interview

Circle the response that best describes how you feel. Quite Nearly Never Rarely Sometimes frequently always 1. Do you feel that your relative asks for more help than he/she needs? 2. Do you feel that because of the time you spend with your relative that you don't have enough time for yourself? 3. Do you feel stressed between caring for your relative and trying to meet other responsibilities for your family or work? 4. Do you feel embarrassed over your relative's behavior? 5. Do you feel angry when you are around your relative? 6. Do you feel that your relative currently affects your relationships with other family members or friends in a negative way? 7. Are you afraid what the future holds for your relative? 8. Do you feel your relative is dependent on you? 9. Do you feel strained when you are around your relative? 10. Do you feel your health has suffered because of your involvement with your relative? 11. Do you feel that you don't have as much privacy as you would like because of your relative? 12. Do you feel that your social life has suffered because you are caring for your relative? 13. Do you feel uncomfortable about having 0 0 1 1 2 2 3 3 4 4

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friends over because of your relative? 14. Do you feel that your relative seems to expect you to take care of him/her as if you were the only one he/she could depend on? 15. Do you feel that you don't have enough money to take care of your relative in addition to the rest of your expenses? 16. Do you feel that you will be unable to take care of your relative much longer? 17. Do you feel you have lost control of your life since your relative's illness? 18. Do you wish you could leave the care of your relative to someone else? 19. Do you feel uncertain about what to do about your relative? 20. Do you feel you should be doing more for your relative? 21. Do you feel you could do a better job in caring for your relative? 22. Overall, how burdened do you feel in caring for your relative? 0 1 2 3 4

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Instructions for caregiver: The questions above reflect how persons sometimes feel when they are taking care of another person. After each statement, circle the word that best describes how often you feel that way. There are no right or wrong answers. Scoring instructions: Add the scores for the 22 questions. The total score ranges from 0 to 88. A high score correlates with higher level of burden. FIGURE 1.Questions in the Zarit Burden Interview. While this questionnaire was not designed for use in practice, it demonstrates the scope of issues to consider when assessing caregiver burden. Copyright 1983 Steven Zarit. Used with permission.

Surprisingly, research has shown that the level of burden perceived by the caregiver does not correlate with the duration of time spent as a caregiver or the progression of memory loss in the family member who is receiving care.9,10 Studies also suggest that the degree of functional impairment in the person receiving care does not correlate with caregiver burden.11 The degree of behavioral problems in patients with dementia, however, does contribute to caregiver burden.10 When patients with dementia have depression, their caregivers report higher levels of burden.12 Characteristics of the caregiver's skills are directly related to caregiver burden. For example, active coping skills and management strategies are associated with lower levels of caregiver burden. Active strategies include "constructing a larger sense of the illness" and being firm in directing a relative's behavior.13 According to Saad and colleagues,13 a caregiver may develop a larger sense of the illness by making sense of the illness, praying for strength to keep going and

reminding himself or herself that this is something to expect with aging. Family support, specifically frequent visits by other family members, and the presence of a strong social network correspond with lower levels of caregiver burden.8,11 The consequences of a high caregiver burden include an increased risk of the need to place the family member in a One study revealed that long-term care facility as well as increased use of formal approximately 70 hours of care in-home services.14 The societal and economic benefits of per week are required by the reducing the amount of caregiver burden are evident. In caregiver of a person with addition, higher levels of burden may correlate with Alzheimer's disease. increased morbidity and mortality in caregivers.15 Multiple studies10,16-20 have shown that the incidence of depression in caregivers is high, ranging from 18 to 47 percent, and caregivers who are depressed experience higher degrees of burden.21

Health Problems of Caregivers

Most of the research on the health of caregivers has focused on psychologic well-being. Depression is the most heavily researched area in caregiver health. One study22 revealed that anxiety was present in 17.5 percent of caregivers, compared with 10.9 percent of subjects in a matched control group. An increased incidence of anxiety correlates with research that has documented a higher amount of psychotropic drug use among caregivers.23 The incidence of alcohol use among caregivers is uncertain. One study10 showed less alcohol use among caregivers than the general population, and another study24 showed no difference in the amount of alcohol use by caregivers and the general population. When compared with persons who are not in a caregiving role, caregivers perceive their own health status to be lower.23 More than just perception, the immune function of caregivers may be reduced. Research24 has shown that viral illnesses last longer in caregivers than in control subjects. In addition, three measures of cellular immunity have been shown to be lower in caregivers than in control subjects.24 A landmark study15 of caregiver health revealed that elderly spousal caregivers who experienced caregiver strain had a mortality risk that was 63 percent higher than that in control subjects. The implications of this study make early identification of caregiver burden and appropriate intervention even more critical.

Caregivers with more active coping strategies perceive lower levels of burden.

An Office-Based Approach
Caregivers have been described as "hidden patients."4 Family physicians should identify their patients who are caregivers through a detailed family and social history. Caregivers should be assessed for their level of perceived burden and for the presence of affective disorders such as depression and anxiety. In addition, family physicians should assist caregivers with coping

strategies, counseling them about ways to handle behavioral management issues that arise during the course of dementia. The degree of caregiver burden should be assessed systematically. Questionnaires designed to quantify caregiver burden are not intended for use during routine office assessments. In the office setting, asking the patient a few questions can give a measure of the patient's caregiver burden (Table 1). Mental health issues are a significant area of concern. Because depression is the most common health problem in caregivers, it should be screened for routinely. Family and individual counseling may be considered for patients with affective disorders or a high level of caregiver burden.

TABLE 1 Suggested Questions for Assessing Caregiver Burden During an Office Visit
Screening question Area of concern Do you feel that you are currently under a lot of stress? What aspects of your Mental health day are the most stressful? Have you been feeling down or blue lately? Mental health Have you been feeling more anxious and irritable lately? Mental health Do your family and friends visit often? Do they telephone often? Social support Do your friends and family watch your relative for you so that you have time for Social support yourself? Do you have any outside help? Resources Is your relative with dementia having any behaviors, such as wandering, that Behavioral are difficult to manage? management What do you do to relieve your stress and tension? Coping

Social support and resources should be explored if the patient's answers to screening questions suggest a need for outside help. The clinician should ask specifically about the number of visits each week by family members and friends. The patient also may be asked, "Have your family or friends offered to help?" or "Have you accepted the offer?" Respite Care If the caregiver does not receive respite regularly, physicians should give them permission to ask for help and assist them in finding sources for assistance. Ways to suggest sources include stating something like "You might want to think about contacting your church/ synagogue for some help

with your mom. They often have sitting services available." Another approach might be to say, "Getting outside help may be a way for you to get regular time outside the house. I'm going to give you a telephone number so you can contact your local office on aging. It is a good resource for you." Adult day services are an excellent source of respite for the caregiver and provide engaging activities for persons with dementia. The local Area Agency on Aging can provide the caregiver with a list of nearby facilities. In one study,25 caregivers gave respite services a rating of high overall satisfaction. Although formal and informal respite care has been shown to delay institutionalization, respite care has a varied impact on caregiver burden.25,26 Family issues often surface when discussing the specifics of respite care. Numerous and varied family stresses develop around providing care to the family member. The primary caregiver can have difficulty accepting other family members' support while at the same time resenting a perceived lack of support.

TABLE 2 Coping Tips for Caregivers

Educate yourself about the disease your family member is facing and how it may affect his or her behavior, pain level, etc. Find sources of help for caregiver tasks. Contact family, friends, neighbors, church/synagogue, workplace, Area Agency on Aging or other organizations. Keep looking! Protect your personal time for something you enjoy or something you need to get done. Try to find time for exercise, eating well and sleeping enough. Use your personal network of friends and family for support or find a support group for caregivers of dementia patients in your area. Watch out for symptoms of depression (such as crying more, sleeping more or less than usual, increased or decreased appetite or lack of interest in usual activities). Notify your doctor if symptoms of depression are present. Consider how you will feel and what you will do after the caregiving ends.

Behavioral Issues The caregiver's skills in managing behavioral issues should be explored in more detail if the screening questions indicate problems in this area. When assessing the caregiver's skills in dealing with behavioral problems, the physician should give examples of situations, such as "How would you respond to your mother's asking the same question repeatedly, such as, 'Where is John?'" Studies13 suggest that caregivers who are firm and directive tend to have less depression. Physicians should tell caregivers to be more directive, as opposed to passive, in their

strategies for dealing with difficult behaviors. For example, a direct response would be, "Mom, John is not here right now, so let's start getting lunch ready." Physicians should also encourage the caregiver to engage the family member in activities. For example, the caregiver can be asked, "Does your husband help with household tasks?" In this case, the caregiver should be encouraged to involve her husband in simple tasks such as folding the laundry. Strategies for Stress Relief If the caregiver has trouble listing his or her strategies for stress relief, this is an area for further questioning. Coping strategies can be divided into emotion-focused and problem-focused. Examples of emotion-focused strategies are worrying and self-accusation. Caregivers who use problem-focused strategies, such as confronting issues and seeking information have less burnout.26 Physicians should explore these strategies with their patients. A sample question for caregivers would be, "When something goes wrong with your brother's care, for instance, if he loses control of his bladder, how would you react?" Emotion-focused responses are "I'd cry" or "I'd put him in a home." A problem-focused response is, "I'd call the doctor and find out what's happening." A tendency to use emotion-focused responses should alert the physician to an increased risk of burnout in the caregiver. Active coping strategies, such as constructing a larger sense of the illness, are associated with a lower incidence of depression among caregivers.13 The caregiver can be guided toward seeing the bigger picture by stating, for example, "I know this time has been challenging for you. What do you see yourself doing when you are no longer a caregiver?" Support groups are popular outlets for caregivers. One study3 revealed that educational support was most beneficial to caregivers when it was problem-focused, such as on behavioral management. In another study,28 combination intervention that included individual and family counseling sessions as well as mandatory participation in support groups was found to delay the need for nursing home placement. Institutionalization of dementia patients was delayed by 329 days in the intervention group of caregivers, compared with the group of caregivers who did not receive counseling and other forms of support. For many caregivers, much of their burden is related to feelings of loneliness or isolation. Specific groups such as the Breakaway program26 are designed to supplement traditional support groups by providing informal recreational and social activities with a peer group of caregivers who are experiencing similar stresses. Table 2 summarizes some coping tips for caregivers. Elder Abuse After the caregiver's behavioral management and coping strategies are assessed, it is important to consider the issue of elder abuse. Although the incidence of abuse in the dyad of a dementia patient and a family caregiver is not very high, caregivers with a higher burden may have an increased potential for mistreating the family member.29 If abuse is suspected, physicians can contact the appropriate local authorities through the National Hotline for Physician Reporting of Elder Abuse or Neglect at 800-490-8505. Mandatory reporting laws vary by state.

TABLE 3 Resources for Obtaining Information About Caregiving

Alzheimer's Association Telephone: 800-272-3900 Web address: http://www.alz.org National Information Center of the U.S. Administration on Aging Telephone: 202-619-7501 American Association of Retired Persons; a free caregiver resource kit is available (No. D15267) Telephone: 800-424-3410 National Counsel on the Aging Telephone: 202-479-1200 Children of Aging Parents Telephone: 800-227-7294 Telephone: 215-945-6900 Web address: http://www.careguide.cgi/caps/capshome.htm National Family Caregivers Association Telephone: 800-896-3650 Web address: http://www.nfcacares.org The Well Spouse Foundation Telephone: 800-838-0879 Telephone: 202-685-8815 Web address: http://www.wellspouse.org National Hotline for Physician Reporting of Elder Abuse and Neglect Telephone: 800-490-8505 Eldercare Locator (A nationwide service for locating area agencies on aging) Telephone: 800-677-1116 Administration on Aging Web address: http://www.aoa.dhhs.gov Caregiving Online (Online support service through a caregiving newsletter) Web address: http://www.caregiving.com Alzheimer's Disease Education and Referral Center, National Institute on Aging (This Web site includes information about ongoing studies.) Web address: http://www.alzheimers.org CareGuide.com (A personal caregiving resource) Web address: http://www.careguide.net Caregiverzone.com (A Web site for family caregivers, elder care professionals and elderly persons) Web address: http://www.caregiverzone.com

Patient Education Because a lack of understanding about the family member's disease process may worsen caregiver stress, the caregiver's knowledge about the dementing illness and available resources should be explored and additional information provided when needed. Caregivers may be given written educational materials regarding dementia. Resources such as those in Table 3 should also be made available to caregivers.

Anticipatory Guidance
The period following the death of the care recipient can be a difficult transition for some caregivers. One study30 suggests that caregivers who experience high levels of burden during the caregiving role tend to have more difficulty with the bereavement process. After identifying caregivers with higher levels of burden, family physicians should help prepare these patients for the emotional challenges ahead.

Final Comment
Family physicians can have a significant impact on the health and well-being of caregivers. By assessing the caregiver's level of burden, including the issue of depression, the physician can identify caregivers who are at high risk for physical and emotional problems. Family physicians can educate caregivers on behavioral management techniques and coping strategies. By providing the holistic approach to care for caregivers, family physicians can help prepare them for the many phases of this challenging role.

The authors thank Christopher Chambers, M.D., James Diamond, M.D., and Christine Arenson, M.D., of the Department of Family Medicine of Thomas Jefferson University Hospital, Pa., for review of the manuscript and Ms. Cassie Mills for administrative support in the preparation of the manuscript. Dr. Parks completed work on the manuscript during her geriatrics fellowship, supported by the faculty development training in family medicine grant #D15PE53013.

The Authors
SUSAN MOCKUS PARKS, M.D., is an instructor in the Department of Family Medicine at Thomas Jefferson University Hospital, Philadelphia, where she recently completed a two-year geriatrics fellowship and received an award for her fellowship research in caregiver burden from the Delaware Valley Geriatrics Society. Dr. Parks graduated from UMDNJ-New Jersey Medical School in Newark. She completed a residency in family medicine at Thomas Jefferson University Hospital. KAREN D. NOVIELLI, M.D., is clinical assistant professor in the Department of Family Medicine at Thomas Jefferson University Hospital, Philadelphia. She also is director of the geriatrics program and fellowship. She completed a residency in family medicine and a fellowship in geriatrics at Thomas Jefferson University Hospital.
Address correspondence to Susan Mockus Parks, M.D., Department of Family Medicine, Thomas Jefferson University Hospital, 1015 Walnut St., Ste. 401, Philadelphia, PA 19107. Reprints are not available from the authors.