Lamy Center Caregiver Connection: When Dementia Says No! – The Refusal of Care by Patients with Dementia
Written By: Rudi Lamy, MLS, MAS, consultant to the Peter Lamy Center on Drug Therapy and Aging
While performing my duties as caregiver, advocate, and husband, I have seen numerous instances of refusal of care by the patient with dementia. This is often a difficult scenario for me, but as I have learned through experience, it helps to be calm in these situations.
After speaking with colleagues that have seen refusal of care in other settings, I learned something that should have been obvious but wasn’t to me: When a patient with dementia refuses care or acts out, it’s often a sign that they are unable to express their wants or needs.
Once, I was putting shoes on a woman and received a swift kick to the chest for my efforts. Another time, the patient refused physical therapy three times – twice by the therapists and once by me. I’ve seen a patient squirm trying to avoid medications. I’ve even seen a patient try to pull their underwear off, which could have been their way to say they needed changing.
And one more anecdote – during a cold, December day, I was trying to take a dementia patient to a doctor’s appointment. She refused her winter coat, and I was told that if I tried to put the coat on her, she would scream. I did what I had to do – which was put the coat on her – and yep, she screamed.
Throughout my experiences, the refusal of care has occurred in two main settings: in assisted living and in full-time skilled nursing care.
Before I continue, I provide the usual caveat that these are my personal experiences. Do not assume my personal experiences make for universal truths.
In Home Care or Assisted Living
When the patient is refusing care in assisted living, maybe they perceive you as a bully. Maybe they are drawing on a 50-year-old memory that upsets them and have mistaken you as part of that bad experience.
Benjamin Hoff, in The Tao of Pooh, tells us that we can “Stay happy and calm in all circumstances.” This is the time to go into that world with them. Let them be happy and calm in their world. Don’t push, don’t aggravate. Stay engaged and simply agree with them while trying to deduce the root of the problem.
It’s important to consider the patient’s perspective when they are refusing care.
In Nursing Care
Patients being cared for in full-time skilled nursing care present a completely different, yet eerily, similar situation. In their minds, they may be “past hope, past cure, past help” as William Shakespeare wrote in Romeo and Juliet.
They have come to a place where reality and memory may be in a state of flux. One day they may remember most of where they are, and the next they are in an unfamiliar place and wanting to go home. They may even be living in their own home and want you out of their house. This is where refusal of clothes, help, medication, etc. becomes not just a simple no, but a resounding, screaming, even thrashing NO!
Home is what they are remembering, and home is where they want to be.
These notes have been just a summary of my personal observations, but you will find refusal of care – for dementia, cancer, Parkinson’s, MS, ALS – and anything else that may bring a lingering death of mind, body, or both.
While looking for related readings and resources, I found a plethora regarding children and parents, but a dearth about older people and patients. If you wish, please enjoy browsing through the list I’ve made, and thanks for reading.
Rudi
Refusal of Care and Dementia Readings
Mace, Nancy L. MA and Rabins, Peter V. MD, MPH. The 36-Hour Day, 7th ed. (Baltimore: Johns Hopkins University Press; 2021)
Spencer, B. and White, L. Coping with Behavior Change in Dementia: A Family Caregiver’s Guide (2015) [Out of Print; Available Online, Various Sellers]
Against Medical Advice: Addressing Treatment Refusal. Luanne Linnard-Palmer, Ellen Christiansen · 2021
Refusal to Take Medications: Dementia Care (UCLA Health: 2022)
Backhouse T, Dudzinski E, Killett A, Mioshi E. Strategies and interventions to reduce or manage refusals in personal care in dementia: A systematic review. Int J Nurs Stud. 2020 Sep;109:103640. doi: 10.1016/j.ijnurstu.2020.103640. Epub 2020 May 16. PMID: 32553994.
Allen W. Medical Ethics Issues in Dementia and End of Life. Curr Psychiatry Rep. 2020 May 9;22(6):31. doi: 10.1007/s11920-020-01150-7. PMID: 32388736.