Dear dementia


Dear dementia, today I add to my list of things that care partners (caregivers + people with dementia) need right now. It has been less than one month since I pressed my first list.

Long story short, we need to improve the medical appointment experience for healthcare providers and their patients with dementia.

In the spirit of relentlessly pursuing improved doctor/patient interactions (think more effective, efficient, person-centered):

  • What about devoting 1 staff meeting to best communication practices with people with dementia and their caregivers?
  • What about 1 simple change to patient registration?
  • What about 1 one-page, colored paper, large font form to add to the clipboarded forms patients are asked to complete.
  • What about 1 simple communication protocol for staff that assures the clinician knows the patient has dementia before he/she walks into the exam room?

Yesterday at a doctor’s appointment with my client who has dementia, these suggestions would have averted 1) awkward moments between doctor and patient and 2) agitation and irritation for my previously calm client that spilled over into the rest of her morning. NOTE: my client has anosognosia: impaired awareness of illness, inability or refusal to recognize a disorder that is clinically evident.)

Well-intended questions by the nurse and the doctor that my client could not answer:

  • have you ever had this condition before? (my client: “NO”; me: “yes, see form with this info that I handed to the receptionist”. Doctor: “I don’t have that form. It is being entered into the computer at the reception desk.”)
  • of these 3 treatment options which one do you want? (my client: looks at me with confusion and rising anxiety. me: “maybe you want to discuss with your primary care doctor.” my client: nods slowly.)
  • what number should I use to call you with pathology results? (my client: anxiety off the chart. “I don’t need you to call me for any reason”. me: responding to doctor’s and nurse’s question “do we call you?”. me: “call Power of Attorney. See number on form that is still sitting on reception desk”. My client: angry, angry, angry,  “I don’t have a power of attorney! What are you talking about? You do not speak for me!”)

My caregiver wish list:

  • lightly colored 1 page form for caregiver to complete: is the patient you are accompanying today experiencing mild to severe cognitive impairment/decline?. Yes/No If yes, hand to nurse or clinician along with medications list.
  • in-service training for staff: ways to implement and grow an informed dementia-friendly medical practice (not that staff yesterday were unfriendly to us. Dementia-friendly is a philosophy that promotes a person-centered, inclusive, effective partnership with people with dementia and their caregivers (e.g., refer to care partners instead)
  • implement a color-code communication job aid to discreetly indicate that this patient has dementia or cognitive impairment: purple sticky note added to that one form that we know makes its way to the doctor’s hands. You know, the form that the doctor writes on that is used to generate the patient’s invoice.

Dear dementia, I commend the doctor’s and nurse’s professionalism and patience with my client yesterday. They handled an awkward situation the best they could.

I also commend them for speaking directly to my client, asking her questions, offering her a diagnosis and treatment options and repeating their words again and again because of my client’s short-term memory loss. Frustration crept up for all of us.

I am grateful to the nurse that returned my post-visit telephone call yesterday afternoon so that I could explain my client’s diagnosis and provide her daughter’s (Power of Attorney)  contact information along with emphasizing that the daughter has medical decision-making authority for her mom.

I write this with sincerity in search of a simpler, more effective dementia care partners/healthcare team experience.


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