The CARERS Program
By Andrew Pick, CPCA
The CARERS program offers a series of interactive workshops designed to address the needs of family caregivers providing home care to individuals with dementia.
Six years ago, Sylwia Haas had a decision to make. Her 62-year-old mother, who lived four hours away and had recently lost her spouse, had been diagnosed with dementia two years previously. And it was neither practical nor safe for her mother to live alone.
Difficult decisions usually emerge from a struggle between intuition and logic. We assume most conscious decisions are made by analyzing a problem and choosing a rational solution. Intuition, however, operates far more nimbly than logic and may, in fact, drive the majority of personal decisions.
In Haas' case, representing logic was a limited view of what was in front of her at a relatively early stage of her mother's illness. To predict the disease's trajectory or the toll it might take would require knowledge and experience she hadn't acquired. Intuitively, a mother-child relationship spanning four decades powerfully stoked the primal need to fulfill her filial duty: to give back. When Haas and her spouse chose to take her mother into their home, there was no hint of irony, no clue that the very driver behind the decision to provide care—the relationship—was to become its most prominent casualty.
Unfortunately, in many cases, particularly those involving adult children caring for parents with dementia, theirs is not the only relationship in jeopardy. Early on, a psychogeriatrician had warned Haas that her primary responsibility was to her family. "You think, 'yes, of course,'" she says, "but find over time that you do put your parent ahead of the family as you try to keep up with a disease that consumes you and ultimately dramatically changes your relationship with your spouse and children."
Haas reached the point where she felt she was losing control. Her spouse complained she was no longer there for her family, too busy planning several days ahead to inhabit the moment. She felt helpless. "You argue with your spouse and yell at your kids, then your spouse yells at you for yelling at the kids and you realize this can't go on," Haas says.
According to Joel Sadavoy, MD, a geriatric psychiatrist and director of the Cyril & Dorothy, Joel & Jill Reitman Centre for Alzheimer's Support and Training at Toronto's Mount Sinai Hospital (the Centre), caring for someone with a physical illness requires some degree of sacrifice by the caregiver, but there is emotional reciprocity via the ongoing relationship. In dementia, the disease destroys that sharing of life. "The caregiver is not only giving of themselves," Sadavoy says, "but doing so in isolation. Dementia is an increasingly isolating disease for the caregiver, not at the beginning, but it is a progressive inevitability."
What is it like for an adult child, having accumulated decades of shared experiential markers and a vast network of emotional touch points connecting parent and child when slowly, or suddenly, these relational anchors lose their purchase?
"I think that adds a huge layer of complexity," Haas says. "You are striving to sustain a relationship that doesn't exist anymore. My mom has lost her ability to communicate. None of the customary rewards are available from a person who is no longer who they used to be for you."
According to a 2013 paper on the CARERS program in the World Journal of Psychiatry, carers, usually spouses or adult children, "enter the caregiving role…with little knowledge of and few skills to deal with dementia."1 Not surprisingly, it is the behavioral and psychological symptoms that pose the greatest challenge for the caregiver, sometimes referred to as the second patient, due to the enormity of the burden he or she assumes. Adding social and financial hardship to the mix further serves to impair carers' problem-solving ability and reduce their caregiving capacity.1
When Sadavoy and his colleagues originally conceived the CARERS program, intervention models had generally not taken a comprehensive view of caregiving. Other than providing some education, there was a narrow focus on practical task-oriented activities, typical of looking after someone who is physically impaired. Given the progressive debilitation of the care recipient in tandem with the growing isolation of the caregiver, it became evident that a complex intervention process was necessary.
Studies showed that interventions developed from cognitive behavioral theory (CBT), which aims to help people change how they think (cognitive) and what they do (behavior), appear to be effective. Rather than focusing on the causes of distress in the past, the therapy looks for ways to improve an individual's current situation. Derived from CBT principles, problem-solving therapy (PST) is a structured intervention that addresses a practical goal of the program: to help caregivers learn the core skill of understanding how to put their feelings aside.1 This means not having to win the argument, learning how to avoid making the issue the core focus, and shifting attention instead to the comfort and need of the care recipient.
The CARERS program identified three pillars of need: managing the instrumental, practical, day-to-day issues such as finances, personal care, and maintaining a safe environment; addressing the caregiver's lack of skill and experience, which is essential because of the professional level of skill required to deal with the marked changes in personality and behavior; and addressing the emotional complexity of the caregiving role. "If the emotional capacity is not present, the whole thing falls apart," Sadavoy says. "Without the emotional strength to utilize their skills and strategies, caregivers will fail; either they will get sick, emotionally disturbed with depression or anxiety, or break down physically."
The program is conducted as a series of 10 weekly workshops with five caregivers in each group. Two health care professionals trained as group leaders conduct the workshop along with a standardized patient whose role is to engage with each caregiver as he or she describes problematic or painful encounters with a parent or spouse. Through questions and observation, the standardized patient attempts to simulate the interaction by assuming the role of the dementia patient and creating the problematic situations with the caregiver. The group leaders provide expert coaching to help the caregiver address both practical and emotional issues inherent in their daily experiences with the care recipient.
The first four sessions utilize PST to help caregivers control emotions by teaching them to think in a formal, problem-solving way. This is followed by six weeks of simulation training. Group members may then attend a monthly maintenance program that extends over one year.
Haas, who recently completed the 10-week workshop, acknowledges that the program has served a practical purpose. "You learn a lot about dementia in general and how to problem-solve things you have to deal with on a daily basis," Haas says. Although she'd had difficulty discussing the effects of caregiving on her family and professional life with friends, the safety and security of the workshop provided the perfect outlet. "These are people who understand what it's like," she says. "They know the feeling of too much to do in one day. They don't need any background information to talk about things there wasn't space to talk about before."
The practical and personal benefit Haas has derived from the CARERS program is not unique. Results of the study published in the World Journal of Psychiatry indicate that it was generally effective in "improving caregiving competence, stress coping ability, and mental well-being."1
Program expansion is under way on a number of fronts. Community Care Access Centres (CCACs) coordinate and deliver regional health care services across Ontario. PST training was provided for nearly 200 Toronto Central CCAC care coordinators working in the home. Both clinical and statistical results of this initiative were strong in all measured parameters.
A suite of tools and a contact system have been developed to help 250 primary care physicians in Toronto address dementia in their practices and provide referral to resources to help both caregiver and care recipient.
The Canadian government has funded the Centre in support of a five-year program to help caregivers employed in the Canadian workforce provide care at home. The Working Carers program needed a vehicle through which to adapt the intensive, face-to-face therapeutic practices to the workplace. Ceridian, a provider of employee assistance programs to corporate clients, has partnered with the Reitman Centre for this purpose. The Carer program trains health care professionals hired by Ceridian to provide group interventions in the workplace using the program model. A formal research study will assess the impact of the program on workplace performance.
It is believed that the CARERS model is the first of its kind "to make systematic use of standardized patients trained to play the role of persons with dementia for hands-on training of informal carers…"1 The training of standardized patients in the simulation roles has become a separate area unto itself with the launch of a Calgary initiative using a protocol that will help create a pool of people able to perform this challenging work.
While there are drugs that may temporarily improve symptoms, there is no cure for dementia and no treatment that stops its progression. Although growth in research dollars has been tepid and pales in comparison to funding for cancer research, the tide may be slowly turning. The British government recently committed to increasing its research funding by 25%, according to an online Press TV report, and has pledged to find a cure for dementia by 2025, according to a BBC online news report. Australia has earmarked an additional $200 million for dementia research over the next five years, according to the Australian Journal of Dementia Care. An initiative of the Alzheimer Society of Canada focuses on research and funding on dementia, calling for a National Dementia Plan and pointing out that the country lags behind countries such as the United States, France, Australia, and the UK, which already have plans in place.
Fortunately for Haas, her challenging caregiving role has been mitigated through her participation in the CARERS program. Reflecting on the arduous journey she and her family have undertaken and the ambivalence caused by some of the choices made along the way, with the benefit of hindsight, she says, "I only wish I had got into this program a year ago."
— Andrew Pick is a certified professional consultant on aging and a volunteer for the Alzheimer Society of Canada. A graduate of the Understanding Dementia MOOC (Massive Open Online Course) from the University of Tasmania, he authors articles on caregiving.