Caring for the Caregiver

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John* believed he was a model caregiver to his wife Lori* who had dementia and used a wheelchair. He anticipated her every need and made decisions he felt were best for her. Lori, on the other hand, vigorously resisted John’s help and accused him of insensitivity and aggression. Both were caught in an emotional whirlpool of confusion, anger and sadness at the growing chasm of miscommunication and loneliness that was creeping into their marriage. Caring for a person with Alzheimer’s disease is a challenging experience that can often strain the relationship between the caregiver and the recipient of care. If left unchecked, caregiver burden can quickly spiral into grief, anxiety, anger, guilt and exhaustion. Statistics prove it: nearly 40 per cent of caregivers report being depressed. This is a much higher rate of depression than exists in the general population. It makes providing emotional relief to the caregiver almost as vital as providing physical and mental support to the patient. Based on empirical evidence that caregivers of Alzheimer’s patients need support and training that is often not available to them, a team of mental health professionals at Mount Sinai Hospital’s Psychiatry Department has pioneered a first-of-its-kind caregiver support initiative that caters specifically to the emotional needs of Alzheimer’s caregivers.The Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer’s Support and Training, which officially launched in October 2008, uses professional actors who behave like Alzheimer’s patients and enact brief scenarios to train caregivers through tailored role play. (The actors are provided through an alliance with the Simulated Patient Program at the University of Toronto.) The simulations are filmed and played back for caregivers so health professionals can coach them on how to effectively respond to and manage challenging symptoms, such as memory loss, social withdrawal, mood swings, aggression, spatial confusion and diminished judgement. It became clear to John during one such session that his wife resented his body language and tone of voice, which seemed to suggest she was no longer his equal. He was able to salvage his relationship with the help of professionals who helped him build on his nonverbal skills and improve his interactions with his wife.Dr. Joel Sadavoy, Geriatric Psychiatrist, Director of the Reitman Centre and one of the pioneers of the program at Mount Sinai, says the emotional approach goes beyond the educational tertiary-care approach in long-term care facilities, or specialty dementia programs that educate caregivers about the disease, discuss the challenges of coping with it, and suggest some steps that could help. “We try to understand how a caregiver is reacting emotionally, why he or she may be reacting that way and how we can help deal with the challenges,” says Dr. Sadavoy. “It is a responsibility not just of the social support system in the community, but a responsibility of the health-care system, because caregivers are vulnerable to a variety of physical and emotional challenges.” The 10-week caregiver program caters to small groups of four to six caregivers and is divided into two components. The first four weeks comprise formal problem-solving therapy intervention tailored to the specific needs of the group. The six weeks that follow consist of practical training based on the principle that intervention is most effective if it occurs at the same time as the encounter. Throughout the program, caregivers are encouraged to build mutually supportive networks that could assist them in dealing with challenges and combating isolation. Professionals also counsel them on how to effectively solicit help from friends and other family members, and not carry the burden alone. While the caregivers are being trained, their wards are provided with concurrent therapy so that they are in a safe, nurturing environment during the meetings and training sessions. “The most effective programs are the ones that deal with the caregiver and the care recipient in tandem,” explains Dr. Sadavoy.Another novelty of the program is that scenarios come from the caregivers and include all of the patient’s behavioural nuances, not just standard situations anticipated and recreated by health professionals. Once the program is complete, the Centre provides monthly maintenance groups for a year so participating caregivers continue to feel supported. “In Toronto, and maybe even in Canada, this Centre is the first to not only train non-health professionals as Alzheimer’s caregivers, but also provide a continuum of care for caregivers who may show signs of guilt, depression or anger and are in need of mental health care such as psychotherapy, medication management or support groups,” says Dr. Virginia Wesson, Mount Sinai Staff Psychiatrist and Assistant Professor at the Faculty of Medicine, University of Toronto. Though located at Mount Sinai, the program is open to any family caregiver living with and/or caring for a person with dementia. Given its success — measured by high levels of caregiver participation and satisfaction — the program is now being adapted for the Chinese Mental Health Program for seniors in Scarborough. A $600,000 federal grant over three years will further allow the Reitman Centre to refine this model and design a manual that can be used by other groups as well. *Names have been changed to protect privacy.