Invisible Patients: The Battle for Dementia Sensitivity in Medical Care

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The urologist in the ER lacked a soothing voice. She approached Gary with the news that he needed a penal catheter. As his POA (power of attorney), I instructed, “My husband does not know what that is. He has moderate-to-severe dementia.”


Ignoring me, she began instructing Gary to take a deep breath. I met her eyes. “Can you explain to him what you are doing or provide a mild sedative?”


“I do not have time for that! I have other patients.”


Holding Gary’s hands, I looked into his eyes, “Okay, sweetheart, we can do this. I demonstrated this by taking a deep breath. She began inserting the catheter allowing him no time to relax or process. He began to thrash and scream. She instructed a large male nurse to hold him down. A caregiver never forgets the screams or the panic in a loved one’s eyes.


“You are traumatizing him! Gary has the mental capacity of a 4-year-old.” Ignoring me, she finished the insertion. It was more painful than most and drew blood.


“Are you kidding me? Is that the best you could do? Have you no dementia sensitivity?”


She began, “If he took a deep breath, it wouldn’t have hurt as much.”


I attempted to process the lack of dementia sensitivity for her patient. It’s a learned skill that increases awareness and understanding of the disease. But, sadly, in ERs, hospital wards, and facilities, it’s not always seen.


A realist evaluation was done in the UK to examine factors that encourage hospital staff to provide dementia care. It concluded that providing training is not enough. Upper management needs to recognize dementia care as skilled work. It must be prioritized and rewarded the same as clinical work.


Dementia sensitivity should be a concern. Approximately 6.7 million Americans will suffer from some type of dementia in 2023, and a projected 13.8 million by the year 2050. Early-onset dementia affects 350,000 younger adults. Most families know someone who has the disease. According to the Alzheimer’s Association, there is minimal or no formal preparation for dementia in the public health workforce. The lack of geriatric training in medical schools permits medical professionals to enter the workforce with minimal exposure to the needs of older people.


A review by Justice in Aging found that 23 states require dementia training in long-term care facilities (skilled nursing). But only 14 require more vigorous training in Alzheimer’s special care units.  In assisted living facilities, 44 states require dementia training, but only 14 require dementia training in special care units. Six states have no dementia training requirements in assisted living. The training provided is varied and inconsistent.


Certified nursing assistants perform daily living tasks for dementia patients in facilities. A properly trained aide demonstrates verbal and non-verbal communication competency, responds to a patient assertively, not aggressively, and practices acceptable touching. Techniques for redirecting patients, handling confusion, and de-escalating aggressive patients are also learned skills. Specialized dementia training results in patients experiencing better communication with caregivers and positive outcomes on psychological and behavioral systems. It also decreases turnover and burnout.


Untrained dementia healthcare workers increase the likelihood of abuse and neglect. The urgency to fill facility positions is never a valid reason to place unskilled workers on the floor. On the contrary, it jeopardizes the well-being of vulnerable dementia patients and hinders the carer experience.


In 2020 a systematic review of eleven hospital dementia training programs were studied. The Holton’s model was used to measure effectiveness and outcome. Programs with varied and interactive training methods and person-centered approaches were two characteristics of effectiveness. Positive outcomes produce changes in clinical practice, utilize training experts, mentors to transfer knowledge, and raise awareness.

The average monthly cost of a memory care facility nationwide is $8,821. One expects the high price guarantees certified dementia-sensitive staff. However, many patients are accepted, and staff are ill-equipped to care for them. Often these patients are dumped in ERs.


Specialized dementia care training must be mandated for anyone interacting with dementia patients in long-term facilities, homes, hospitals, rehabilitation centers, doctor offices, urgent care centers, adult day care centers, etc.  Alzheimer’s organization is one of many that provides on-line curriculum and certification.


Alzheimer’s (only one form of dementia) was diagnosed in 1906. 117 years ago! It is time that the medical community addressed this massive deficit in service by mandating dementia care training and including it in clinical practice guidelines. I hope that in the future other patients will be spared the trauma Gary experienced in his 8-year journey with the disease.


Rose Jordan

Rose Jordan served in the USAF, Department of State, and later as a computer training and support specialist. She was a two-time newspaper columnist and dabbled in other writings. After adopting her son at age 40, her passion for helping foster youth earned her an MSW degree. She spent many years teaching and supporting high-risk youth and adults.

After four years of searching for answers, in 2018, her husband Gary was formally diagnosed with vascular dementia. He passed away in December 2022. In her retirement years, she is committed to educating others on the plight of dementia caregivers. She hopes that they will receive the attention and resources they deserve. She is currently writing her first book, A Journey of Love. It documents eight years being her husband’s compass in a world he could no longer navigate.

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