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Mental Illness and Social Isolation

This testimony was given by Michael B. Friedman, Chairman of the Geriatric Mental Health Alliance of New York, at a hearing held by the New York City Council Committee on Aging on February 13, 2006.

My name is Michael Friedman. I am the Chairman of the Geriatric Mental Health Alliance of New York, an advocacy group with over 1100 members, convened by the Center for Policy and Advocacy of the Mental Health Associations of New York City and Westchester. For the past two years we have worked in New York City and in New York State to call attention to the need to prepare to meet the mental health challenges of the coming elder boom. We are very pleased to have the opportunity to testify today regarding the link between social isolation and mental health problems.

About 1/3 of New York City’s Older Adults Live Alone

For some this is not a problem:

They spend time with friends
They go to movies, museums, concerts, social clubs, and senior centers
They hold down jobs or do volunteer work
They may have always lived alone, or they may have lost spouses or partners to divorce or death
No matter, being alone does not frighten them, depress them, or slow them down

Some Who Live Alone Become Isolated

But some of the New Yorkers who live alone become isolated. My aunt, for example, lived a life she enjoyed until she was about 70. She worked until 62; she never married, but she had friends with whom she went to shows, concerts, and restaurants. They sometimes stayed in and played Scrabble or canasta. She played the piano well enough to please herself. She liked a whiskey from time to time. At 70 her mother—with whom she had lived most of her life—died. Her life began to unravel. She started to depend on me and a cousin to take care of her day-to-day problems. After a few years both of us moved away. She had her first psychotic break—immobilizing fear. She snapped out of it quickly. But over time the psychotic episodes became more frequent. I went with her on many ambulance rides to crowded, noisy emergency rooms where she would wait for hours. Her best friend died. She stopped inviting other friends over. She became more depressed—a pity case to her friends, not a person to be with for fun.

She tried a roommate, got paranoid and threw her out. Over time she stopped going out except to the doctor. We arranged for health aides—lovely people but completely at a loss when she became psychotic. I visited regularly but not often. My cousin pulled back. He’d burned out taking care of his mother. I handled the crises when she refused to eat or drink or became psychotic. This dragged on for years. I arranged for psychotherapy at home. Once a week didn’t make a dent in her isolation, and the therapist knew nothing of cognitive-behavior therapy, which would have focused on getting her to go out of her apartment, to do something, to reclaim her life.

I arranged for a friendly visitor from the synagogue. Once a month didn’t make a dent. Charity is not a real human relationship. I should have spent more time with her, but I worked 12 hours a day, had a family, and lived more than an hour away. Over time I burned out. None of the help givers involved with her suggested that I should get help.

Eventually I agreed with her doctor and the social workers at the hospital that she had to be in a nursing home. She lived 5 more years in a different kind of isolation, stripped of dignity and with few people to talk with except the people paid to care for her. They were very kind, like warm, nurturing parents with their baby. She died in their care while I was out of town visiting colleges with my daughter. They told me proudly that they had done all they could to revive her. I thanked them and didn’t mention the Do Not Resuscitate Order written in huge letters on the front page of her chart.

10 Major Facts About People Living in Profound Isolation

I tell this story because I think it illustrates some of the major facts about people living in profound isolation.

Many have had good lives. I think those of us who try to help too often forget that the sad, old person in front of us once led a good life—and might have the potential to lead it again.
Losses of family, friends, and work can have a devastating impact on people. Life as one knows it is gone. Shaping a new life is incredibly difficult for some people.
Mental illness is a major contributor to social isolation. People become depressed; lose interest in the things that used to give their lives meaning and pleasure. They lose hope. They become anxious, convinced that no one wants to be with them, fearful of the streets, of crowded places. People become suspicious and distrustful; some develop full-blown paranoia.
It is difficult for people to get treatment. Few home-based services are available. Transportation is often a problem. Co-pays can be more than a person can afford. Few bilingual professionals are available for people who are not comfortable speaking in English. American professionals are frequently not skilled at engaging people from ethnic and racial minorities.
For my aunt access was not a problem, but poor quality of treatment was. She might have benefited from one of the forms of evidence-based treatment for depression, but the mobile mental health service I found for her sent a well-meaning person with out-of-date clinical skills. In addition, my aunt relied more on her primary care physician, whom she had known for years, than on the psychiatrist who would visit from time to time, but was a stranger. I tried to pass information back and forth between them, but as far as I know, they never talked with each other.
It is also striking that the home health aides who lived with my aunt much of the time did not have a glimmer how to deal with her psychotic episodes. These women were among the most caring people I have ever met in my life, but they were not prepared. They didn’t even know when they had to call for help, couldn’t recognize the psychotic episode as it began.
For my aunt, an alternative level of housing—something between staying in isolation at home and being placed with people with whom she could not communicate in a nursing home—might have helped. We need housing alternatives that can help people who have become socially isolated to develop social connections that are meaningful to them.
For my aunt being treated with the dignity owed a mature person rather than with a patronizing semblance of respect could have been very helpful. Once, for example, I visited her at the nursing home shortly after Halloween. A rehabilitation specialist proudly showed me a photo of my aunt—who looked very glum—dressed as a pumpkin. A nice idea for a child. For a depressed woman who had once been a competent adult? I don’t think so
I think that my aunt’s case also illustrates that family caregivers need support. I was viewed as intrusive by the mental health professionals involved with my aunt because I had strong views about how she should be treated and insisted on being involved in treatment decisions. It never occurred to either the social worker or the psychiatrist whose opinions I questioned that I was reaching a point of personal desperation, that I might be depressed myself that I needed help. I was just a pain in the behind who didn’t visit enough. Ultimately I threw my political weight around to get service to which my aunt was entitled. (I was a Deputy Commissioner in the New York State Office of Mental Health by that time.) It didn’t really help my aunt. I needed support, not to win concessions because of fear of my power.
One last thought—I had enough money to arrange whatever my aunt needed. Still it wasn’t good enough. I hate to think of what befalls people without money. Medicare and Medicaid do pay for some services, but there are huge problems financing appropriate services.

Mental Illness at the Core of Social Isolation

Mental illness, I think, is at the core of most cases of social isolation—if not as a cause then as a consequence. Older adults who live alone often can have good lives if they have the determination and energy to get out into the world. Many of them are inhibited by hopelessness and fear. Of course, people become isolated because of physical disabilities, because of abandonment by their families, and because the neighborhoods they live in have become homes to different ethnic and cultural groups, often resulting in fear—warranted or not—of going out. But this sort of isolation almost inevitably results in significant psychological distress.

What should New York City do? The United Neighborhood Houses report contains many important suggestions, which we support. But, as my testimony indicates, there is a critical need for innovative approaches to confront mental illness in people who are socially isolated. I am pleased that we are working with DOHMH (Department of Health and Mental Hygiene) and DFTA (Department for the Aging) on a variety of promising projects along these lines. In addition, we strongly recommend that New York City establish a fund to support demonstration projects, similar to the demonstrations that are included in the Geriatric Mental Health Act of New York, which was enacted in 2005. The fund could be used to fund projects not funded by the State or to match State funding so as to mount larger projects. I would be glad to provide a list of possible projects at another time.

I am grateful for the opportunity to have spoken with you. Thank you.

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