Healthcare Bias Against Care for Older Adults with Dementia
By Pamela D. Wilson, MS, BS/BA, NCG, CSA
The healthcare industry is biased against care for older adults with dementia. For example, differing opinions exist about providing physical rehabilitation also called physical therapy for older adults with dementia recovering from hip fractures. Medications for dementia are discontinued by doctors without knowledge of the serious physical declines that occur. Older adults with dementia deserve dignity, medical care, and empathy from healthcare practitioners.
Healthcare practitioners, physicians, physician assistants, physical therapists and others are negatively biased against supporting care for older adults with dementia. Physical therapy falls into this bias and is believed to be a futile effort. Medications for dementia and daily care needs are often dismissed.
Mention of failure to thrive and the progression of the disease process are common. If you hear these statements, perk up your ears. These statements mean that your doctor has dismissed care and treatment options.
It’s either time to find a new doctor or to become a stronger advocate for the care needs of your loved one so that care and treatment are provided. Never let anyone tell you that your father, mother, spouse, sister, brother, or other family member with dementia is a disposable commodity.
Old age and beliefs in the healthcare industry that persons with dementia are unable to follow directions results in poor physical therapy outcomes. Physicians are quick to discontinue medications they believe have no benefit to treat dementia.
My experience as a healthcare advocate, committed to the care of older adults with dementia, contradicts the beliefs of many healthcare industry providers. Options exist. Hope exists. Giving up is not an option unless this is the desire of the older adult.
Healthcare Practitioners Are Biased and Insensitive
My experience as a care advocate confirms that the healthcare community is insensitive to the needs and dignity of older adults with dementia who experience hip fractures and other medical conditions. Family caregivers are subjected to poor treatment and often do not know how to advocate for a loved one with dementia.
I recall conversations with multiple physicians who had the nerve to say to me, “why even operate? He or she is old and has dementia. They’ll die anyway.” Pneumonia? “He’s lived a long life, let him go rather than providing anti-biotics.” My response was always treat my client.
How would these physicians feel if someone said this about their parent or a loved one? As far as I know euthanasia is not a treatment for a hip fracture. Old people are not animals to be “put down” because a physician views them as old and no longer useful. Urinary tract infections, pneumonia, and other conditions are treatable
The statistics indicate the known risks specific to care for older adults with dementia.
- The Alzheimer’s Association confirms that 32% of persons over age 85 are diagnosed with Alzheimer’s Dementia. (1)
- It is known that a diagnosis of dementia complicates medical treatment. Studies by Toussant and Konia confirm that “dementia does not complicate recovery and functional gain post-hip fracture in those who were mobile before the fracture.” (2)
- Another study confirmed that walking ability is a predictor of survival in this population. (3)
General healthcare practitioners who do not specialize in dementia fail to avail themselves to information specific to the dementia population. If this information was of interest, different decisions would be made regarding the type of surgery for hip fractures and the higher level of physical therapy required for success. Different decisions would be made regarding general care.
Let’s review the path of what happens as the result of a hip fracture for an older adult with dementia. Post care and treatment is a low priority for healthcare practitioners due to negative beliefs. Family caregivers are the only hope to prove doctors wrong and to give a loved one the opportunity to regain physical abilities.
Hip Fractures: Not Walking Results in Forgetting How to Walk
Older adults diagnosed with dementia, who do not walk on a regular basis, lose their ability to walk when comparing abilities day to day, week to week, and month to month. Walking is a lose it or use it proposition. As muscle strength decreases, balance becomes wobbly or uneven. At the same time walking speed declines. The combination of these three challenges increases the likelihood of a fall and hip fracture.
The type of surgical treatment for a hip fracture varies by the type of the fracture. The type of repair should be discussed. Does the repair involve screws or pins only (these are more likely to fail). Does the repair involve a total hip replacement? The next question to ask the orthopedic surgeon is “how quickly after surgery will weight bearing be allowed?”
The answer that you want to hear is “within 24 hours”. If the answer is that your loved one will be non-weight bearing for an undetermined period of time take this as a warning signal. Questions about the type of surgery should again be raised. Discussions about dementia and the surgeon’s experience with a dementia diagnosis should be questioned.
The type of surgery provided should support near immediate weight bearing and a return to walking. If not, the surgeon is guaranteeing a wheel-chair bound life and death within a short time frame.
“A delay in getting the patient out of bed leads to poor functional recovery and worse 6-month survival.” (4)
Once an individual with dementia stops walking, the ability to walk again is unlikely without significant effort, and even then, may not be possible. Daily movement that is repetitive, like walking, is an automatic skill. When an automatic activity, like walking, is removed for any length of time from the daily routine of a person with dementia, the memory of how to walk does not return.
I had a client who proved this theory correct. Prior to the fall he was able to walk with a walker. A fall out of bed occurred. The surgery involved only pins and screws and non-weight bearing that was intended to be temporary but was then extended to a period of 60 days.
What happened? The client could no longer recall how to move his feet or stand. In physical therapy sessions he became fearful of standing between the parallel bars. He did not know what to do with his feet. The idea of placing one foot in front of another to walk was gone. He never walked again and became wheelchair bound. Within the year he died.
Other clients of mine who were dedicated daily walkers who fractured hips and had surgery, were up walking the day after surgery. Returning to their assisted living communities, they continued to walk as before and lived for many years after the surgery.
Daily Physical Therapy and Exercise is Mandatory
My experience, confirmed by research, indicates the importance of daily walking for all older adults. Especially older adults diagnosed with Alzheimer’s disease.
For adults admitted to skilled nursing communities for rehabilitation, serious discussions should be held at the first care conference about the frequency and time commitment to rehab. The challenges in many communities is the concept of “patients’ rights.”
Patient’s rights mean that all individuals are asked to consent to activities. Persons with dementia are asked if they wanted to participate in physical therapy. Experienced healthcare providers know NEVER to ask an individual with dementia a yes or no question as the response will be no.
For example, “Ms. Smith are you ready to come to rehab?” Ms. Smith says no. The physical therapist marks “refused” on the daily sheet and moves on to the next patient. Job done.
After seven days Ms. Smith has made no progress as she continually refused to participate in physical therapy. At the weekly skilled nursing meeting, the insurance reviews the list of refusals and discontinues coverage. Ms. Smith is discharged from physical therapy. She is sent home or back to her care community and is now permanently wheelchair bound which poses new health risks.
This lack of being proactive and recognizing the importance of providing dementia patients with special treatment, brings me back to the same question, “if this were your mother would you allow her to refuse therapy?” I would be shocked if the answer I received from the physical therapist was a yes.
Little thought is given by healthcare staff in communities about appropriate ways to approach dementia patients to gain participation. Training is sorely lacking.
Why Dementia Patients Refuse
Healthcare providers must learn to increase the sensitivity level to persons diagnosed with dementia in all aspects of care provided and in healthcare provider-to-person interactions. Interactions with family caregivers deserves the same level of respect.
Persons with dementia deserve and require special treatment. They cannot successfully be treated unless special considerations for memory loss are made. Questions with yes or no answers should be eliminated from vocabulary.
Dementia patients refuse to participate in physical therapy after a hip fracture because they are often feeling pain and are unable to communicate being uncomfortable to the physical therapist. As needed pain medications cannot be provided by care staff unless the individual asks.
An individual with dementia does not know how to ask for pain medication. The better option is to have the physician prescribe pain medication 30 minutes prior to physical therapy sessions. However, this leads to the next necessary special consideration.
Family and Special Support for Therapy
Time of day is important in choosing a physical therapy time for older adults with dementia. Mornings may be better, afternoons terrible, or vice versa. Physical therapists in care communities rarely take this into account. They have a list of persons who require therapy and work down the list. Again, a no when asked for participation is documented as a refusal with negative consequences for insurance payments.
What is the best way to ensure that aging parents and spouses receive physical therapy after a hip fracture? When at all possible if a familiar family member can be present, this is best. A son, daughter, or wife is able to provide the encouragement and confidence so that the aging parent or spouse participates in therapy with no refusals. If at all possible, daily visits should occur throughout the therapy stay.
If family visitation is not possible, I suggest hiring a caregiver who is a CNA through a home care agency. The CNA must be skilled in using a gait belt, transferring, and walking. While approval must be provided by the skilled nursing community for a hired caregiver to participate in care, this type of support in lieu of family is beneficial. Having a second set of eyes on a care situation is also helpful.
After the rehabilitation stay, daily walking continues to be important. It is unlikely that care staff in an assisted living or memory care community will have time to make this type of effort for any extensive period of time. The most you might expect is participation in a “walk to dine” program. It is up to family to visit for daily walks or to hire a CNA to walk, even if only several days a week. This activity will support quality of life for your loved one.
Dementia Medication Connection to Physical Abilities
Research by Rolland, confirmed that medications for memory loss (also called acetylcholine inhibitors or referred to as AChE) are often discontinued by physicians. Discontinuing these medications can lead to physical decline that results in falls and physical injuries. AChE inhibitors post a positive benefit for walking and other daily functions. Collaboration between geriatricians and specialists has the potential to avoid this type of inattentive errors.
“AChE inhibitors were found to be associated with a lower risk of decline in walking ability and this factor remained statistically significant in the different models. (5)
As a caregiving advocate and fiduciary in the role of guardian and medical power of attorney, I have witnessed the decline in my dementia clients when the physician discontinued Aricept, Galantamine, or Exelon without my permission. The physician felt the medication was no longer effective in ceasing the decline of memory loss.
The declines in physical function were rapid, Often, within a day I received calls from frantic caregivers at assisted living and memory care communities concerned about my clients. I would ask the obvious questions whether anyone had made changes in medication. It was then that I discovered that the physician had visited and made changes without asking for my legal permission. I confirmed with care staff that I would call the physician and have the medication reinstated.
As the result of discontinuing the memory loss medications, several of my clients were no longer able to feed themselves, meaning raise a fork from plate to mouth. Others began experiencing difficulties dressing and walking. Research proves that these medications have protective actions for walking, behaviors, inflammation, and depression. In my time as a caregiving advocate, I quickly opposed discontinuing memory loss medications because I had witnessed the rapid, adverse consequences.
Ethical Treatment of Older Adults With Dementia
Evidence and practical experience confirm that caring for loved ones with dementia is complicated and challenging. When injuries occur, the complications become more apparent and serious. Ongoing advocacy is needed to counteract the negative perceptions, biases, and beliefs of healthcare providers about persons diagnosed with dementia.
For family caregivers, learning to advocate with healthcare professionals with confidence is important. Many caregivers are concerned about retribution from healthcare providers when disagreements occur so they say nothing. Saying nothing can be detrimental to the care of a loved one. If you need assistance seek support or programs that offer caregiving support to teach advocacy and how to respond to a variety of caregiving situations.
If you found this article valuable, subscribe to my monthly newsletter for family caregivers. You can also join my private Facebook group for family caregivers. Caregiving support for difficult family situations is within your reach.
© 2018 Pamela D. Wilson, All Rights Reserved.
(1) Alzheimer’s Association. “2018 Alzheimer’s Disease Facts and Figures,” Alzheimers Dement 2018. 14(3) 367-429. P 19. https://www.alz.org/media/Documents/facts-and-figures-2018-r.pdf
(2) Toussant, E.M. and M. Kohia. A Critical Review of Literature Regarding the Effectiveness of Physical Therapy Management of Hip Fracture in Elderly Persons. J. Gerontol A Biol Sci Med Sci 2005 Oct;60(10) 1285-91.
(3) Rolland, Y. et. al. Predictors of Decline in Walking Ability in Community-Dwelling Alzheimer’s Disease Patients: Results From the 4-Years Prospective REAL.FR Study. Alzheimer’s Research and Therapy 2013, 5:52 http://alzres.com/content/5/5/52.
4) Menzies, et. al. Prevention and Clinical Management of Hip Fractures in Patients with Dementia. Geriatric Orthopaedic Surgery & Rehabilitation 1(2) 63-72. Doi: 10.01177/2151458510389465 http//:gos.sagepub.com
Pamela D. Wilson, MS, BS/BA, NCG, CSA, a National Certified Guardian and Certified Senior Advisor, is a caregiving and elder care expert, advocate, and speaker. Pamela offers family caregivers programming and support to navigate the challenges of providing, navigating, and planning for care. She guides professionals practicing in estate planning, elder and probate law, and financial planning to create plans to address unexpected concerns identified in her past role as a professional fiduciary. Healthcare professionals are supported by Pamela’s expertise to increase responsiveness and sensitivity to the extensive range of care challenges faced by care recipients and caregivers.