Old and Under Medicated: Mental Health and Memory Loss the Complications of Receiving Appropriate Medical Care
By Pamela D. Wilson, CSA, MS, BS/BA, CG
Many older adults, because of the stigma of being diagnosed as mentally ill or depressed, never mention these concerns to a physician or totally refuse medical treatment until a situation veers out of control and treatment becomes a necessity. These individuals recall that grandma or grandpa exhibited similar behaviors and were called “crazy.” Grandma and grandpa’s children, who may now be your aging parents, are fearful of a similar label known by other names as depression, bi-polar disorder, Schizophrenia, anxiety, or one of many types of personality disorders.
Adult children who become caregivers commonly tell me, “mom (or dad) has always been moody, avoidant, suspicious, verbally abusive, used alcohol or drugs, in denial, or narcissistic; to us this was normal family life.” Unknown to most children who become caregivers, these descriptors are potential indicators of mental illness or a personality, or anxiety disorder. As individuals age and become isolated, mental illness becomes more visible where many of these aspects were previously hidden by a spouse or a career. Adult children, now caregivers, are faced with challenges related to care of aging parents with mental health and memory loss diagnoses.
A diagnosis of memory loss is more likely with individuals who experience longstanding depression in combination with isolation and lack of social contact. Many individuals diagnosed with memory loss become depressed as they experience their memory declining and fear what will happen next as the disease progresses. Anxiety is also common among individuals diagnosed with memory loss. Many diagnosed with memory loss become anxious about leaving home, some become suspicious or paranoid of loved ones, others experience angry outbursts in response to changes in routine or environment, others are fearful of being left alone.
These behavioral changes are challenging for family caregivers who feel a responsibility to care for a loved one but have no idea how to caregive when refusals of care or difficult behaviors want to make the caregiver dream of walking away from the care situation. Combine the emotional loss of seeing a loved one decline with the experience of angry behaviors and some caregivers are at an emotional loss of how to manage the situation. Caregivers of persons with mental illness and memory loss experience an equal if not greater decline in their physical and emotional well-being. Many caregivers become overwhelmed by the care situation, not knowing what to do, or feel guilty that they feel frustrated and angry about interacting with a loved one.
A diagnosis of mental illness and memory loss, represent a dangerous complication related to the ability to receive medical care and treatment. Dangerous because many physicians are inexperienced at treating individuals with this dual diagnoses; many refuse to see that the behaviors of an individual diagnosed with mental illness may also be related to the behaviors of an individual with a memory loss. If there is no past experience in this area many primary care or internal medicine physicians refuse to treat and punt care to the psychiatry community. The number of experienced geriatric psychiatrists and geriatric neuropsychologists are few; many no longer accept Medicare due to poor reimbursement making receiving available treatment for older adults a challenge if not an impossibility.
The complications of age and medications prescribed to treat mental illness, often called anti-psychotics, make physicians fearful of prescribing medications that have “black box warnings” potentially increasing the likelihood of heart failure, infections, falls, and death for older adults. Nursing homes and care communities are under fire for over medicating residents, also referred to as applying chemical restraints. Federal law prohibits the use of anti-psychotics and other psychoactive drugs for the convenience of care community staff. The Centers for Medicare and Medicaid Services have an ongoing initiative to reduce the use of anti-psychotic medications in nursing homes.
The Challenges of being Old and Under Medicated
While it is wise to be prudent and cautious with behavioral interventions; there are times when unless the underlying symptoms of depression or other mental illness is treated, the situation will not improve. Interventions to respond to behaviors arise from two schools of thought nonpharmacological (no medication) and pharmacological (prescribe medication).
While it is accurate that some behavioral symptoms are the result of the behavior of the caregiver or the effects of the environment on an individual, outside effects are not always the reason for the behavior. For example, persons with mental illness and memory loss benefit from: calming environments, regular routines, exercise, enjoyable activities, participation in day programs, maintaining a regular day-to-night schedule, massage or touch therapy, aromatherapy, art, or music therapy. Many of these activities serve as behavioral interventions resulting in an individual who is calm, cooperative, and compliant with medical care and who willingly participates with caregivers.
Caregiver education about nonpharmacological treatment is extremely important as well as the recommendation that the caregiver seek education and participate in supportive programs or groups. Caregivers who are able to place themselves in the position of the individual diagnosed with mental illness and memory loss are able to become more empathetic, understanding, and compassionate in regard to the caregiving situation. A sense of humor is also helpful as well as having a plan for respite and a willing ear on a bad caregiving day.
When nonpharmacological efforts fail, medication should be considered. For many individuals diagnosed with mental illness and memory loss who also experience complications related to mental health, medications to treat depression are beneficial. This is where the challenge between caregiver, care receiver, and the medical community arises especially when behaviors prevent care and place an individual at risk of self-harm or self-neglect.
While nonpharmacological actions and depression medication are successful for many individuals, there are other situations where this protocol is insufficient. These are the caregiving situations that rarely appear in articles or in the news because these caregivers are fearful of being accused of neglect. The healthcare system knowingly admits to the challenges of treating mental health and memory loss, the lack of appropriate systems for diagnosis and treatment, the lack of available and skilled providers, and the lack of communities willing to manage the care of this neglected population. Information about this segment of the population rarely appears in the press. There is no profit in treating mental health or in shifting resources to treat this segment of the aging population that has a terminal diagnosis of memory loss that will eventually die.
I have been involved in many situations where an older adult diagnosed with mental illness and memory loss refuses medical treatment or refuses daily care from a family caregiver or caregivers in a care community. These represent frustrating situations because of having to battle the healthcare system, physicians, and others to provide needed care.
Many of these individuals have been deemed incompetent and have a family or a professional guardian responsible for their day-to-day care. Many care receivers refuse to take medications, to participate in appropriate hygiene, refuse medical care, occasionally refuse to eat, and many times their behaviors are angry, aggressive, and threatening to caregivers and others.
What does one do about an individual who refuses to be changed but has been lying in urine and feces for several days? What does one do about an individual who has open wounds that are infected and refuses to allow treatment or take medications? What does one do about an individual who is diabetic and refuses to eat or drink? Observers on the outside might wonder how difficult can this situation really be?
These are the impossible situations where a care recipient may be physically violent and purposely injure caregivers who attempt to provide assistance. Where the care recipient refuses or is unable to make decisions in their own best interest—yet community staff raises the typical patient’s rights response saying, “it’s the patient’s right to refuse care.”
Where do we draw the line between patient’s rights to refuse care that may result in their death due to self-neglect or poor decisions? When do we become responsible for acknowledging that a person deemed incompetent is making poor decisions and agree to take action to provide care? When physicians and care communities are involved, the answers to these questions represent a gray area of no one wanting to take responsibility due to perceived risk.
The medical community, because of the concern over prescribing anti-psychotics, refuses to appropriately evaluate and treat care recipients with a diagnosis of mental illness and memory loss. I recently had a psychiatrist say to me, “the black box warnings indicate that prescribing this medication may result in death.” This was in reference to a client who was refusing wound care treatment for serious life threatening wounds, who was refusing to take medications in pill form, refusing to eat, and who was physically threatening nursing home staff due to longstanding depression (that was not being treated), a personality disorder, and a diagnosis of memory loss. While the black box medication may cause death, this client’s refusal of care would likely have the same result if not treated. After significant arm twisting, the psychiatrist finally agreed to prescribe liquid anti-psychotic medications.
It should also be noted that this client was sent to the emergency room multiple times; hospital staff refused to evaluate for depression or mental illness in spite of having to hire a sitter to monitor for aggressive and threatening behaviors. After all, the mental illness was not the primary reason for admission to the hospital. Multiple skilled nursing communities refused to accept this individual due to concern of being a threat to other residents; once an individual requires a sitter in a hospital this information becomes part of the individual’s permanent record. Future communities considering care for this individual see the record regarding behaviors and refuse to grant admission.
For care recipients diagnosed with mental illness and memory loss treatment options are poor. No one wants to be the physician or the care community accused of over medicating a care recipient. Hospitals don’t feel a responsibility to evaluate for mental health issues when this may not be the critical cause of admission. Geriatric psychiatry units refuse patients with this dual diagnosis because an individual with memory loss cannot possibly participate in therapy for mental health. Skilled nursing communities do not want problematic patients that may injure their frail elderly residents. No one wants a care recipient diagnosed with mental health and memory loss who exhibits problematic behaviors.
The reality is that there are few options to ensure that care recipients diagnosed with mental health and memory loss receive treatment. Success in this area requires a significant amount of advocacy, effort, and persistence by family members who are consistently told that nothing can be done. Success required repeated phone calls, written requests, medical appointments, meetings, and being the squeaky wheel who demands care for a loved one. Care communities are not always supportive because of the concern of administering anti-psychotic medications. Physicians don’t want the risk of prescribing black box medications.
Medical care and medications for care recipients diagnosed with mental health and memory loss will continue to be a challenge as the population continues to age. Digging our heads in the sand and focusing on the aspect of older adults who are over medicated does not serve the segment of older adults who would benefit from medication. Change in this area will require persistent advocacy, publication of ongoing situations, the Centers for Medicare and Medicaid Services acknowledging that treatment for mental illness and memory loss in combination is a problem, and a change in federal and state laws to support care of the aging and mentally ill also diagnosed with memory loss.
What can you do about someone who is old and under medicated?
Pamela D. Wilson, MS, BS/BA, CG, CSA, Certified Senior Advisor specializes in working with family and professional caregivers to navigate healthcare and aging concerns. Wilson, an expert in the field of caregiving, has personally helped thousands of family and professional caregivers since 2000 in her career as an advocate, a care navigator, and an educator. Through her company, The Care Navigator, she is an advocate and service provider in the roles of guardian, power of attorney, care manager, and transition specialist. She was producer and host of The Caring Generation®, from 2009 to 2011, an educational radio program for caregivers on 630 KHOW-AM. In addition to her work at the Care Navigator, Pamela gives back to the community by serving as chairperson of the Community Ethics Committee in Denver, Colorado.
Her new book, The Caregiving Trap: Solutions for Life’s Unexpected Changes, is available through all major bookstores as well as on PamelaDWilson.com. You can follow Pamela on YouTube, Facebook, Twitter, and Linked In.