“How are you doing?”
That simple, common question conveys caring and concern. Nearly a decade ago, the American College of Physicians (ACP) recommended that doctors ask this question of those who care for older or chronically ill patients. But according to a new A-LIST® survey, caregivers don’t hear those words often enough from health care providers.
The A-LIST® is an online community of individuals living with or caring for those living with Alzheimer’s or other dementias. Members participate in various studies and research projects, providing unique, self-reported data that represents the voice of the patient and caregiver community. This caregiver-focused survey reached over 600 current and former family caregivers of people with dementia and other chronic and progressive illnesses. The survey respondents were approximately 80% female and had provided care for periods of time ranging from less than six months to more than ten years, and almost all of them had accompanied their ill family members to at least some medical visits. (Two-thirds of the 16 million Americans providing unpaid care for people with Alzheimer’s or other dementias are women, making their voice ever more important.)
61% of the survey respondents believed their family members’ doctors were aware of their status as caregivers. Respondents also reported that, through the course of an appointment, doctors were generally respectful, made good eye contact, gave clear information, and most often asked them their name, relationship to the patient, and whether they could add any relevant information to add to the discussion not given by the patient. But caregivers also reported that only 10% of doctors asked how respondents themselves were coping. Nor did the nearly two-thirds of doctors who knew the respondents were caregivers provide advice about how they might manage their situations better.
This is far from the standard of care advocated in the respected 2010 ACP position paper referenced earlier. “Family Caregivers, Patients and Physicians: Ethical Guidance to Optimize Relationships” urges physicians to “be alert for signs of distress in the family caregiver and suggest appropriate referrals.” This paper was published in the ACP’s Annals of Internal Medicine, one of the most widely cited and influential medical journals in the world. The paper also recommended that physicians “should monitor family caregivers for distress due to issues of loss during the period leading up to and after the death of the patient.”
The caregiver-focused A-LIST® survey, however, suggests physicians are not addressing these issues frequently enough. Why not? It’s true that there is commonly lag time between the publication of any new clinical practice guidelines and their adoption into practice – a process referred to as “knowledge translation.” And, in the case of supporting caregivers, some physicians may feel reluctant to provide support, believing that it’s either not within their purview or responsibility (despite the ACP’s guidelines) or because of a lack of specific knowledge, skills, sensitivity, and time.
Interestingly, despite caregivers needing help from physicians, the UsAgainstAlzheimer’s survey results indicated that receiving such assistance was not at the top of family caregivers’ priority list either. The three most important doctor behaviors listed by them addressed care receivers’ needs--talking respectfully to patients, appearing interested in patient concerns, and the provision of understandable information. It suggests that physicians may, in part, be responding to cues they receive from the caregivers.
“Just once in my more than twenty years of caring for my husband with early-onset Alzheimer’s did a physician ever inquire about my health or how I was coping, even though research clearly supports that the caregiver is the second, but often invisible, patient,” said Meryl Comer. Meryl is a co-founder of UsAgainstAlzheimer’s, a national non-profit advocacy group urgently working to support research for a cure through mechanisms like the A-LIST®. She says, “Perhaps it is the wrong setting and inopportune moment for the question, ‘How are you doing?’ Women, who make up two-thirds of Alzheimer’s and dementia caregivers, are often reluctant to admit in front of a loved one for whom they are caring that they are having a hard time coping. Our research of over 600 Alzheimer’s caregivers showed that the majority report themselves as ‘stressed, but able to manage.’ The good news is that previous A-LIST® research also shows that many caregivers still remain hopeful. In fact, 32% of caregivers feel inspired and empowered to better their lifestyle. Every day, caregivers are changing their outlook on life and do their best to live each day with positivity and hope.”
“How are you doing?” is only one possible question that physicians could ask caregivers about how they are coping. Others include, “How is caregiving going?”, “What impact is caregiving having on your life?”, and “Many people say there is both good and bad in caregiving; what is your experience?” Any attempt on the part of physicians to genuinely learn more about the lives of caregivers will better help them support loved ones living with dementia and, hopefully, improve clinical outcomes.
It’s been nine years since the ACP guidelines were issued. In 2019, caregivers of people with Alzheimer’s or other dementias are expected to provide an estimated 18.5 billion hours of informal assistance and unpaid caregiving. Physicians have an important role to play, empowering and arming caregivers in their fight against this disease. It’s time we redouble efforts to follow the ACP’s recommendations and listen to caregiver needs in order to understand what matters most to them.