Caregivers for loved ones living with Alzheimer’s disease or another dementia are sometimes deemed “invisible patients.” How well are caregivers’ needs addressed by the medical system? Unless the entire family are patients in a medical practice, or unless the patient brings up his or her role as caregiver, their needs often remain in the shadows.
Caregivers of persons with any illness are often neglected by the medical system that is focused on the patient. And caregivers often neglect themselves as well. Addressing caregiver stress is vital for the health of both the person living with the disease as well as the caregiver.
One of the aspects of being a primary care physician was having the privilege of knowing whole generations of families in my practice. Often, the patient with dementia and their caregiver were both patients. That made it easy to ask after the caregiver’s health and well-being at each visit with their loved one. I did this even when the care partner wasn’t my patient, but probably less often or intensely. I wanted to make sure that they understood that their physical and mental health were important. I would ask what specific things they were doing to care for themselves, and who they were leaning on for help with their loved one. And I’ve written many blog posts about caregiver self-care. See these five posts below.
https://www.reneeharmon.com/2020/02/10/take-care-of-yourphysicalself/
https://www.reneeharmon.com/2020/02/17/take-care-of-youremotionalself/
https://www.reneeharmon.com/2020/02/24/taking-further-care-of-youremotionalself/
https://www.reneeharmon.com/2020/03/02/taking-even-further-care-of-youremotionalself/
https://www.reneeharmon.com/2020/03/09/take-care-of-yourspiritualself/
I’ve written and spoken extensively about needing a team when caring for someone living with dementia. I believe this team approach is needed in the medical care system as well. Physicians, nurses, pharmacists, counselors, and social workers should be able to work as a team to provide ongoing best practices for the patient as well as the caregiver.
Coordinating this care among various medical personnel can be problematic when many different systems and providers are involved.
Patients have long complained that physicians and others in the health care system don’t communicate well with each other. There was significant hope that once we had electronic medical records (EMRs), this problem would be solved. However, because there are so many different EMRs, it hasn’t worked that well. The different EMRs don’t communicate with each other automatically. The practitioner still has to make sure his or her report is sent to the appropriate people. Even within one hospital, there may be different EMRs used by the different practices. Only very large, coordinated systems have this ability, but often, patients find such systems to be cumbersome for a host of reasons.
There is actually a fair amount of new research being done on how the medical system can best tend to caregiver needs. I can barely scratch the surface, but I want to highlight a couple of areas that are being investigated.
One area of focus is on using technology to assist family caregivers. There are apps and websites that purport to help streamline scheduling, assess caregiver stress, and offer a place to document symptoms, diagnoses, medications, and appointments. A family caregiver would need to be comfortable with this technology, though, in order for it to be successful.
There are studies that look at these technologies as well as studies that look at direct contact with caregivers via telephone or computer. In a large medical system, this usually involves a team of social workers contacting family caregivers on a regular basis to asses their stress levels and their needs. The social workers would then offer possible further help via referrals for more intensive mental health counseling if needed, or give concrete suggestions for stress reduction techniques.
For too long, caregivers of persons living with dementia have been ignored and forgotten. Maybe these new research efforts can start to bridge this gap.