The Value of Caregiver Support: How Research has Influenced Practice
An acquaintance, let’s call her Susan, recently said to me, “I am going to have to leave my job pretty soon.” She said her husband had become very forgetful, and sometimes got confused when he was not in his own home. She said she expected that at the rate things were going, within the next few months her husband would need full-time care and she wouldn’t be able to go to work. “He forgets where he puts things and he also asks repeatedly what their plans are. When I insist that he try to remember, sometimes he does, so I sometimes think he just needs to try harder.” Last year his regular doctor told her that this was just because he was getting older, and she wanted to believe that was true. In the past few months, however, he had become more forgetful and confused, and she decided to go to a neurologist, who recommended a comprehensive evaluation. In spite of her suspicions, she felt devastated when she learned that her husband was in the early stage of Alzheimer’s disease. She told me that she hadn’t told anyone else and felt very lonely and was always on the verge of tears. She wanted to believe that nobody noticed the changes. Her friends had not said anything to her about it, trying to be kind, but that meant she had no one to talk to about what was most important to her.
It is not unusual for caregivers to be reluctant to disclose the diagnosis to friends and family. They may think people won’t want to socialize with them if they know. But they do know, and those who care about her would probably be more supportive if they could discuss it, rather than everyone pretending nothing has changed.
Spouse or partner caregivers, who may have been used to confiding in their husbands or wives, may feel especially lonely when that seems no longer possible. Adult children, who may have thought their parents were fine on their own will have to become accustomed to the fact that their parents increasingly need help, and they will have to figure out how much help they can offer.
My research, and that of others, has demonstrated that social support is essential to the well-being of family members of people with dementia. Understanding why the person behaves the way he or she does is also important. How did we find this out?
We did a randomized trial, with funding from the National Institutes of Health, of a program we named The NYU Caregiver Intervention (NYUCI). The study began in 1987 and lasted for more than two decades. The NYUCI is individualized to the needs of each family, and the goal of all its components is to help caregivers get the support they need for as long as they need it. The NYUCI includes a comprehensive assessment, individual and family consultation within a fixed period of time, and the opportunity to call the person who provided the consultation for additional counseling and support — in a crisis, whenever they feel the need for additional help or guidance or want information about resources. The NYUCI also provides education and training, as needed, so the primary caregiver and the rest of the family, understand the effect of the illness on the person with dementia, and how best to respond to needs, foster strengths and adapt activities to assure the best possible quality of life for themselves and the person for whom they are caring. They also learn about the symptoms associated with each stage of dementia, so they can adapt their expectations and provide the right balance of safety and independence for the person with dementia, and understand when another medical condition may be causing a symptom if it appears to be occurring earlier than one might expect. Our experience suggests that all components of the intervention are helpful, but that family consultation is the most important, as caregivers learn what help they need, how to ask for help, and what is reasonable to ask. Family members learn how to offer help and how to have positive supportive interactions, rather than being critical or telling the primary caregiver what they think would be best.
We proved that the NYUCI increased caregivers’ satisfaction with emotional and practical support, and the number of people to whom the caregivers felt close. As a result, caregivers were less depressed, less stressed and enjoyed better physical health. Because their own well-being improved, they were able to keep their relatives at home with them longer than people in the study who did not get the NYUCI.
The demonstrated benefits of the NYUCI led to other studies around the United States and abroad that corroborated our findings. We also showed that the intervention could save governments significant amounts of money by postponing nursing home placement. These findings led to funding of programs that offer services to caregivers throughout the state of New York, through grants from the Department of Health. One of these programs is based at NYU School of Medicine. Our program, based on the principles of the NYUCI, emphasizes improving social support, educating caregivers and health care professionals, and perhaps most importantly, helping and encouraging families dealing with dementia to have the highest quality of life possible. CaringKind is a subcontractor on this grant providing respite and support group services to caregivers in our program.
Often it takes time for families to fully accept that their lives will be forever changed once they receive news of a diagnosis. Caregiver “L” was referred to the NYU Family Support Program a year ago, as her husband had been diagnosed with early-onset Alzheimer’s. She met with a social worker and said she felt ambivalent: “I don’t really know why I’m here. I don’t really need anything right now.” After a couple of months, she called with some practical questions about getting a Power of Attorney and a Healthcare Proxy. She seemed to be interested in hearing how other people handled these issues, so a suggestion was made that she consider being matched with a Peer Mentor — someone who had already experienced caregiving issues and could provide personal support and guidance. The Mentor helped her to see that she needed to have a conversation with her children about the diagnosis in order to begin to mobilize the family. At first, her children were not interested in meeting with her social worker. Over time, her daughter began to call the social worker, to ask questions about dementia and see how she could help out, as she saw how her mother benefited from the support. Eventually, L’s children joined family sessions, and found that having a neutral place to discuss uncomfortable issues and problem-solve together was helpful for the entire family. Meanwhile, L and her husband participated together in several arts programs, museum tours, mindfulness and meditation groups. This year, they joined our new chorus, which rehearses and gives performances at Riverside Church in Manhattan. The NYU Family Support Program and the comprehensive programs offered by CaringKind provide the essence of the NYU Caregiver Intervention — consistent personal and professional support over time, which is the key to navigating memory disorders.
What about Susan? What can she do right now to make her life, and that of her husband, easier? She consulted with one of the NYU Family Support Program social workers who suggested that she not assume that she has to leave her job at once as there are many ways to provide care, and she didn’t have to do it all herself. The social worker suggested that Susan could get help with financial planning. She also suggested that when he says he cannot find something, she might say, “I don’t remember where it is either, so maybe we should look for it together,” which might make him feel less belittled. She might want to figure out what they both enjoy doing that he still can do, rather than trying to get him to be better at what seems now to be a struggle for him. But the most important thing she can do is figure out how to get the support she needs. The social worker suggested they meet with her husband’s children to discuss their understanding of the situation and what they would like to do to help? She also suggested that Susan might want to consider joining a support group so she could talk with others in a similar situation. The counselor suggested to the other family members that they might want to join one as well. The social worker helped Susan to see that she does not need to be alone with the new challenges she is facing. There are many ways to find help and support and it would be most kind to herself and her husband if she included those who care about them to help care for them.
Mary S. Mittelman is research professor of Psychiatry and Rehabilitative Medicine at NYU School of Medicine and the director of the NYU Alzheimer’s Disease and Related Disorders Family Support Program, which was launched in 2016 with funding from New York State to provide comprehensive services to family caregivers of people with dementia. Trained in psychiatric epidemiology, she has been developing and evaluating psychosocial interventions for people with cognitive impairment and their family members for three decades.