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Taking care of family members with dementia can contribute to psychiatric illness among caregivers. What strategies have you used to help these caregivers address self-care?

Caregiving is an ambiguous term, like recovery. Since I have always worked toward the complete recovery of all of my patients, the "new" discovery that we should join the recovery movement and somehow convey to our patients and their families that a person "can" recover is, to me, mainly a PR tool. It won't make a person go from sick to well overnight, and it won't cure a person without the proper treatment.

In the same way, good care should always be part of the prescription for every patient. The questions facing us today refer to informal caregivers--families, friends, and neighbors--who provide the support and the 24/7 care needed by patients who are suffering from mental in-capacities such as Alzheimer's, chronic debilitating illnesses such as uncontrolled diabetes or angina, or chronic deteriorating illnesses such as Parkinson's disease or long-term schizophrenia. Specifically, this month's questions were inspired by a study of hundreds of in-home caregivers in five U.S. cities (Ann. Intern. Med. 2006;145:727-30).

The caregivers were ethnically diverse: 212 were Hispanic or Latino, 219 were white, and 211 were African American.

For some of the caregivers, an intervention addressing caregiver depression, burden, self-care, and social support through 12 in-home and telephone sessions over 6 months helped improve their quality of life. For example, the prevalence of clinical depression among the African American caregivers was lower among those in the intervention group than in the control group (12.6% vs. 22.7%). Hispanic and white caregivers in the intervention groups also experienced significantly greater improvements in their quality of life than did those in the control groups.

Clearly, the burden experienced by these informal caregivers is enormous, and for those who have never had the personal experience of having a sick person totally dependent on them--not only for getting their meds on time, but also for feeding, bathing, bowel and bladder function, and transportation--it can become the most burdensome responsibility in life.

It is not unusual for caregivers to be exhausted and angry, and to feel guilty about being angry at a loved one who is helpless. This guilt can lead to very serious depression, further exhaustion, psychological complaints, and illnesses, and the depression can get much worse if or when the patient dies. The caregiver is stuck with serious and severe self-recrimination, often very deep and unremitting self-blame, and worsening symptoms of depression.

Unfortunately, many doctors ignore the caretaker, who often has important information to impart. In my humble opinion, what the caregiver has to say is much more important to the life of the chronic dependent patient than are heart rate, blood pressure, or other physiologic symptoms related to the patient's illness.

It is important to remember that the caregiver needs praise, support, and appreciation--some feedback that makes the hard work and the effort seem worthwhile. Human beings thrive on praise, and the caregivers need a pat on the back every once in a while to help them keep going. Keep in mind that there are about 1 million cases of elder abuse in the United States each year. Many of them, I feel sure, are the result of caregiver disgust and rage.

Years ago, we all felt the primary duty of the nurses on a ward was to provide TLC. Although that aspect of their job has not disappeared entirely, nurses nowadays are busy with documentation and with making the nurse diagnosis, double checking medications to avoid mishaps, and a plethora of other tasks. Doctors, too, when they had fewer definitive therapeutic measures, gave more of themselves to both patients and their families. House calls were a blessing for families overcome with worry. Seeing the doctor approach the house was enough to bring relief. Anxiety-easing comfort was a major role for generalists and specialists.

The combination of the demystification of medicine and the enormous pressure of time has changed the average physician's view of his or her job. There is no time to chat, to answer questions, to reassure or comfort when an average office appointment lasts only 6-15 minutes, let alone to interview the caregiver and get a snapshot of what is actually going on in the house. Remember that the patient is often on good behavior in the doctor's office.

About 10 years ago, Rosalynn Carter initiated a program on caregiving at Georgia Southwestern State University that is still in place. She did a demonstration project in rural Georgia in which most of the helping agencies in the region came together to maximize the help provided to those who were old, debilitated, dependent, and/or diseased and who could not survive without assistance.

Based on the success of this venture, she established the National Quality Caregiving Coalition (NQCC), to which I was and still am the American Psychiatric Association representative. This group consists of more than 30 national organizations invested in the issue of caregiving in one way or another: hospice and mental retardation groups, the American Psychological Association, and many others.

Among the items that we have discussed is the need for a federal law related to respite care payments for caregivers. People who have to work 24 hours a day for 52 weeks a year are sorely in need of some relief. Even when families are able to afford help or have insurance that pays for some help in the home, that help is limited. These home care workers, no matter how good they are, do not really have to worry about all the factors involved in a dependent patient's care, and they do not ultimately bear the responsibility for the overall welfare of the patient.

Another issue with which we have struggled at NQCC is the need for universal recognition of the problem. As I indicated above, this is not a minor issue. It contributes to the general disdain in which the medical profession is held by the public and to the many grievances against the house of medicine. We tend to be callous when it comes to those who suffer from chronic illnesses. In some instances our narcissism is severely challenged when we find that we cannot help a patient.

I am currently caring for a very wealthy 80-year-old woman who greatly deteriorated after the death of her husband. Two factors have made caring for her extremely difficult. One is her deafness--she can hear very little and refuses to leave the house to get fitted for a better pair of hearing aids--and the other, which is much more serious, is her stubborn refusal to do anything to help herself improve. It has been almost 3 years and she shows signs of further deterioration every time I see her. Her arguments are extremely circular. She also looks awful, with straight, stringy hair, but she refuses to go to the hairdresser because she is embarrassed about how she looks.

The same kind of adamant refusal to do something involves almost anything that is suggested. She has aides in the house at all times because she can afford it, but they are of little help because they feel alienated and useless.

I speak with her primary physician regularly and with her son, who is a physician, and we really cannot figure out what to do. Her husband was extremely responsive and essentially did everything for her. Her deepest wish is to have her two children give up their lives for her as her husband did. A trial of every antidepressant and two series of ECT have not moved her. My frustration and anger are almost visible, and I attribute part of it to my narcissistic injury.

More pertinent to psychiatry is a woman in her 50s who developed a severe case of paranoid schizophrenia in her late 30s. She can do her activities of daily living, but she has sabotaged job after job. She has had several hospitalizations and stints in jail for her difficult, sometimes outrageous, behaviors, all of which are the direct result of her paranoia. Her husband left her, their only son is away at college (thankfully), and her friends have all abandoned her rather than get drawn into her web, so she has no one to watch over her.

The court finally ordered her to take her weekly medication, but there is no one to make sure she does. I am sure every reader has had at least one patient like this. The mental health system is not prepared to deliver chronic care.

We exist in a system that actually fosters a series of acute episodes with full knowledge that, when we discharge a patient from short hospital stays, he or she will be readmitted in the next 6-12 months. It is one of the greatest failings of our system that we no longer treat the whole patient, but participate in this onerous, fragmented system in which a psychiatrist participates either by not seeing chronic patients at all or by seeing them only in public clinics for 15 minutes a month.

Caregiving is a serious responsibility and, as people live longer, the need for caregivers will become even more important. I know a man in his 50s with Asperger's syndrome who grew up under the protective eyes of a loving father who died leaving his son with a very skimpy support system. There was plenty of money, though, and he was admitted to a group home in which he has flourished for the last 5 years. Actually, his life and his world have gotten better after his father's death.

He received speech therapy and made friends in his "house," and he continued to go to work in a university cafeteria where he had worked as a dishwasher for more than 30 years. He also went on trips and cruises with his group and his world widened and became better.

There are some good caregiver stories, but in general when it is left to the family, burnout and exhaustion are the result.

In his book, "Tuesdays With Morrie," Mitch Albom gives us a classic case of amyotrophic lateral sclerosis with the serious deterioration and the increasing need for total care. What we need to do is put this issue high on the social service/medicine/mental health agenda and work hard to achieve the goals set by the NQCC. More resources, more attention, and more empathy must be given to the plight of those who are unable to help themselves.

The Iraq war is providing us with thousands of new amputees and other severely injured soldiers who are coming home to an unwelcoming environment. Psychiatry must take the lead in yet another social service cause--becoming part of the safety net that we as a nation must provide.

DR. FINK is a psychiatrist and consultant in Bala Cynwyd, Pa., and professor of psychiatry at Temple University, Philadelphia.

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Title Annotation:FINK! STILL AT LARGE
Author:Fink, Paul J.
Publication:Clinical Psychiatry News
Geographic Code:1USA
Date:Apr 1, 2007
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