Caregiver Burden: When the Family Needs Help
An 82-year-old woman brought her 84-year-old husband to his cardiologist for a routine follow-up visit. Mr. J has a 3-year history of Alzheimer’s dementia, and his wife had been caring for him at home. He suffers from coronary artery disease and hypertension, and he had a myocardial infarction 5 years ago. A pacemaker was inserted 4 years ago after he developed sick sinus syndrome. Mrs. J is well-liked by the office staff, and she often brings them home-baked cookies. She looked tired and pale as they arrived for the appointment. During the examination, Mrs. J complained that her husband had been sleeping poorly and wandered around their house at night. He wakes her up at 2:00 and 3:00 am, thinking that he has to leave for work. Mr. J has started urinating in places other than the bathroom, including vases in the living room. Several times he has been found wandering in the neighborhood when Mrs. J has taken a nap in the afternoon. His wife begged the cardiologist, Dr. C, to admit her husband to the hospital. She became tearful and refused to take him home, stating there has to be something wrong with him.
Dr. C performed a thorough evaluation but found no acute changes in Mr. J’s physical examination or electrocardiogram. A dipstick of his urine performed in the office was negative, but Dr. C sent a urinalysis and blood for laboratory testing. He was sympathetic and spent additional time talking to Mrs. J about her problems. His office staff asked if they could call a family member to help her, but Mrs. J explained that the couple has no children and her only relatives are two nieces who live in another state. Mr. J started wandering in the office and entered an examination room while another patient was undressing. Mrs. J started crying uncontrollably, and Dr. C began to feel desperate. He sent Mr. J to the emergency room for admission with a diagnosis of “acute change in mental status.” He sent Mrs. J home to get some rest and had his office staff contact the hospital social service department to see what they could do for Mr. J and his wife during his hospital stay.
The majority of care for older adults with dementia is provided by family members. This unpaid, uncompensated care accounts for 80% of direct caregiving provided to older adults who live at home. The majority of these family caregivers are women, including wives, daughters, granddaughters, and others who often have other family and job responsibilities. There is a large and growing body of literature that has identified the negative impact of caregiving on health and well-being.1,2 The role of caregiving has been associated with stress, burden, and adverse effects on the emotional, social, interpersonal, financial, and physical state of the caregiver. Caregivers suffer from an increased risk of depression, anxiety disorders, diminished immune responses, slower wound healing, and a greater incidence of hospitalization than do noncaregiving spouses.2
Caregiving is associated with an increase in mortality, in addition to a general decline in overall health status.3 Many family caregivers describe their strong sense of devotion and commitment to their relatives and find positive aspects to the experience. Caregivers who report a positive effect typically have access to a strong social support network, obtain health maintenance services, and utilize respite care services.4 Caregiver burden has been defined as a state of physical, emotional, and mental exhaustion resulting from the demands of intense involvement with a dependent, ill, or confused person over time.2 Family caregivers typically do not seek assistance for themselves, and they often postpone their own medical care to manage the needs of the identified patient. Most caregivers report that health care providers rarely inquire about their health status and use them solely as informants for the medical needs of the patient.5 Caregivers easily become isolated, frustrated, and tired, yet are intensely devoted to their loved ones. Medical visits for the patient are often the only time to assess the needs of the caregiver, identify problems, and offer interventions.
Practice guidelines devoted to the evaluation and treatment of patients with dementia have been published by both the American Psychiatric Association and the American Academy of Neurology.1,6 Although both guidelines address the need to assess caregiver stress and burden, practicing clinicians have reported that this is an area most likely to be omitted or addressed in a hurried manner.5 The need to provide caregiver education, support, counseling, and training in behavioral management techniques and referral to community services and programs is widely accepted as beneficial (Table I).1,6,7 It is also time-intensive and is typically not a Medicare-covered service if the caregiver is seen without the patient present. Most clinicians report that they would like to spend more time counseling caregivers, but are pressured by time constraints.5
A very recent study revealed that spouses who serve as primary caregivers display ongoing symptoms of depression and anxiety even after nursing home placement was required.8 Use of anxiolytics in the caregiver increased following nursing home placement, and symptoms of depression in the spouse were high. Feelings of depression and anxiety are not alleviated by nursing home placement, even though the physical demands of caregiving are fewer. Few spouses sought help for their symptoms, even after the nursing home placement of their loved one.8 Interventions that promote caregiver education and support have displayed positive outcomes in both reducing burden and distress, as well as in delaying the need for nursing home placement.6,7 Caregiving is clearly a lifestage for many family members rather than a task. This new “stage of life” is associated with health risks and requires screening for depression, anxiety, stress, and burden.7 Counseling, education, support, and referrals to appropriate medical and social resources are required (Table II). Our role as clinicians must include attention to the status of the caregiver as part of the routine treatment of all patients with dementia.
Outcome of the Case Patient
Mr. J was admitted to a medical unit of the hospital. He was found wandering around the radiology department when sent for magnetic resonance imaging (MRI), and he refused to cooperate with any imaging studies. He was given lorazepam 2 mg by intramuscular injection, followed by haloperidol 5 mg intravenously after he was still agitated 20 minutes later. No acute changes were found, and his MRI revealed diffuse atrophy with some old, small, white matter infarcts noted. The remainder of his evaluation was all within normal limits. During the night, he got out of bed several times and was given 3 additional doses of haloperidol 5 mg by intramuscular injection. The next morning, Mr. J was lethargic and unable to eat breakfast. Dr. C discontinued all sedatives, hoping that Mr. J would not suffer any serious side effects from the lethargy and sedation. By the third hospital day, Mr. J was alert, eating, and starting to wander again.
Dr. C arranged for his discharge, hoping that nothing else would go wrong. Mrs. J met with the hospital social worker who referred her to a local senior center that provides a day program for memory-impaired persons. Home care services were arranged during the transition period from hospital discharge until linkage to the community program was arranged. In addition, the couple was eligible for transportation assistance provided by the senior center. Mrs. J was also offered the option of home care agencies that would provide additional services on a private-pay basis. She was not ready to make that decision but was grateful to know that assistance was available. Dr. C also arranged for Mrs. J to be seen for her own primary care medical needs by a geriatrician affiliated with the hospital. The couple returned to Dr. C’s office 3 months later for a follow-up visit. Mr. J appeared more confused and wandered within the office. Mrs. J explained that he is in the moderate stage of dementia, and that she had calmly asked him to come with her to “help the doctor.” Dr. C now routinely provides all caregivers who come to his office with referrals to support groups, community programs, and social service agencies.