Last week I spoke at a conference titled “Inclusive Care: Empowering & Engaging Caregivers as Partners in Care.” Because I have been on both sides of the medical system as provider and caregiver, I was able to share experiences from both vantage points. I also realize that I have a lot more to learn and advocate for on behalf of family caregivers.
What do family caregivers of a loved one who lives with Alzheimer’s disease or another dementia need from the medical community?
First off, they need to be heard and believed from the very earliest point—getting a diagnosis. I cringe today knowing how bad I was at this prior to my intimate relationship with dementia. Yes, I could hide behind the fact that my medical education didn’t train me well for this, but that’s not a good excuse.
Two of my favorite patients were Mr. Fred and his wife, Ms. Vi (not their real names). Mr. Fred made multiple appointments with me to discuss his concerns about his wife’s deteriorating memory. I think it was over a year’s time. I didn’t take him seriously because I didn’t see any worrisome signs when Ms. Vi was in the office. Eventually, and reluctantly, I administered the Mini-Mental Status Exam to her, and her scores were decidedly not normal. I was abashed that I hadn’t taken Mr. Fred’s concerns to heart and was chalking it up to his own anxiety and over-protection. I still feel embarrassed by this.
After Harvey’s diagnosis, I was much better at listening to any patient’s or family member’s concerns about memory. Sometimes this was mentioned as an, “Oh, by the way…”(a statement every doctor dreads.) I assured them that I considered this an important concern and asked them to reschedule a dedicated appointment just for that, and blocked off extra time for it.
It was important to hear from the patient, and just as important to hear from a family member. Conversation with a family member most often occurred via telephone prior to an office visit. Sometimes I was slipped a note or was approached in the hallway. Asking a family member to “rat out” their loved one in front of the doctor isn’t a good idea. It can make the patient feel cornered and ganged up on.
It made me feel very uncomfortable when Harvey’s physicians asked me how he was doing as we were sitting side by side. I wanted to be honest, but I didn’t want Harvey to feel accused.
This need for input from the caregiver increases as the patient declines and is less able to advocate for themselves. Many times, I would see a patient without a family member present and be at a loss as to what was going on. Even if the patient was accompanied by a paid caregiver, I usually called the family caregiver at that point. I needed and wanted as much information as possible in order to make decisions about ongoing care.
Notes taken by the caregiver, with dates, or video, can be helpful for the medical team who only has a short window of time to observe the person living with dementia.
We need each other—caregivers and medical personnel—in order to provide the best care for the loved one with dementia.
Next week, I’ll look at another aspect of how caregivers and the medical system can best work alongside and help each other. If you are a family caregiver, what do you need, or wish you had, from your loved one’s medical team?