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Complicated Dementia: Teaching Caregivers to Recognize Signs and Take the Next Steps

Jones, Andrea L. PhD, MSW; Pastor, Diane K. PhD, MBA, NP-C, RN

doi: 10.1097/NHH.0000000000000514
Feature: CE Connection

Older adults who exhibit extreme behaviors present a complex diagnostic and management picture for home healthcare clinicians and family caregivers. This case study describes the situation of Mrs. M, whose aggressive, combative behavior was so difficult for her children to comprehend and manage, she was secluded in a locked basement of her home. This article details assessment techniques, symptom presentation and possible diagnostic implications, as well as resources for caregivers.

Andrea L. Jones, PhD, MSW, is an Assistant Professor, School of Social Work, University of North Carolina Wilmington, Wilmington, North Carolina.

Diane K. Pastor, PhD, MBA, NP-C, RN, is an Associate Professor, School of Nursing, University of North Carolina Wilmington, Wilmington, North Carolina.

The authors declare no conflicts of interest.

Address for correspondence: Andrea L. Jones, PhD, MSW, School of Social Work, University of North Carolina Wilmington, 601 South College Road, McNeill Hall, Wilmington, NC 28403 (jonesal@uncw.edu).

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Caring for a person with dementia (PWD), including Alzheimer disease, at home is rarely uncomplicated, and the range of possible issues are different in each patient and family scenario. The Alzheimer's Association (2016) notes that Alzheimer disease is the sixth leading cause of death in the United States, that as many as 5.3 million Americans may be suffering from Alzheimer disease, and that astonishingly as few as 45% of patients and their caregivers are even aware of the diagnosis. Providing support and education related to the progressive nature of dementias, and their myriad signs and symptoms is difficult enough in the presence of a diagnosis. Too many family caregivers and professional home healthcare providers are left to wonder what is happening in the face of a patient's declining mentation and at times increasingly bizarre, disturbing and sometimes combative behaviors. As a result, people do not receive adequate attention to basic human and medical needs. Issues that could be addressed and treated are left unattended, and people, both patients and caregivers, suffer as a result.

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Family and home health caregivers are often at the forefront of changes in patient behavior. Many do not know how or when to take the next step or may not be able to identify what the next step may be regarding finding assistance. Black et al. (2013) noted that the unmet needs of caregivers, such as lack of access to resources and service referrals, are significantly predictive of premature placement and perhaps direr consequences for both the patient and their caregivers. Pastor and Vogel (2011) noted that it was not until family caregivers saw the reality of continuing cognitive decline in their loved ones that they could face the need for supportive resources including the possibility of skilled nursing facility placement. Advance nurse practitioners and social workers with community health backgrounds have experience working with very difficult, serious situations. Often however, as with the case described in this article, referrals to these professionals may come very late for patients and families. In addition to the case study, a decision-making process for healthcare professionals, as well as a caregiver assessment guide, is presented.

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Case Study

Mrs. M, a 53-year-old, divorced woman, was referred by an independent long-term-care consultant in a northeastern state to a Geriatric Care Registered Nurse Consultant for a home visit/assessment. The referral indicated that three adult children, two sons and a daughter, were struggling to decide what type of care would be beneficial for their mother who was exhibiting bizarre and combative behavior at the family home. The family home was a well-kept suburban split level. Upon interview, the children seemed unclear regarding their mother's actual medical diagnoses. They reported their mother exhibited poor memory and bizarre behaviors, had lost her ability to communicate using language, and was often confrontational and combative. During the interview, the patient was not present. When asked if the nurse consultant could speak with the patient, a family member picked up a television remote control to turn on a television. The television screen displayed a disheveled woman ranting unintelligible words and pacing in and out of an open door. The family confided that for several months their mother had been living in the lower portion of the split-level home with a locked interior door between indoor levels, but with access to an outdoor patio with a fenced backyard. The children rotated living with her in the home, providing meals, supervision, and attempting personal care. All three were employed professionals, but they realized they could no longer leave her alone in the residence.

The family brought their mother meals on paper plates left just inside the locked interior door and attempted to observe her eating. They were unable to offer assistance with bathing, as their mother was frequently physically assaultive. They had attempted to offer her adult incontinence pads that she frequently refused or discarded. Evidence of urinary and fecal elimination was noticeable on the basement and patio floors. The family was unable to administer any medication. According to their report, their mother had not seen a physician or healthcare provider for many months. They were clearly quite distressed at their mother's condition, having no idea how to continue to manage the situation, and were upset with their “failure” to remedy it. In essence, they were lost in a whirlwind that they did not understand and could not manage.

Upon examining the patient, the nurse was immediately met with a verbally and physically combative patient. Following the nurse's introduction using a calm approach, the patient was able to sit on a soiled couch but could remain there only briefly. The patient began to pace the basement and patio, entering and exiting the outside door approximately 20 times in 10 minutes. The nurse was unable to understand the patient's speech, and could not touch the patient without provoking resistance and combative behavior. As a home healthcare professional, the path forward may not always seem clear in a case with these extreme circumstances, and we may be less sure as to how to proceed. Caregiver education related to assessment and other decisional points for clinicians are discussed below.

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Intervention and Plan of Care

Due to the extreme nature of the patient's behavior, and the clear distress of the family, an immediate referral was made to Adult Protective Services (APS), a subagency of county-level departments of social services with a mandate to investigate reports of adult abuse and neglect, including self-neglect, an adult's inability to care for oneself. Visiting human service professionals have an ethical responsibility to report cases such as this in that the patient was confined in a locked area (albeit due to the family's inability to find a more suitable alternative), and was clearly unable to care for herself or permit anyone to care for her.

An APS worker met the nurse at the patient's residence later that day. The nurse, APS worker, and family agreed that the patient should be removed from the home immediately for further evaluation. The nurse and APS worker helped the family understand that their mother may be suffering from any number of issues: a primary dementia process, a primary or secondary medical issue related to an unknown diagnosis, lack of adequate food, hydration and/or medication, pain, an infection, or psychosis related to some other psychiatric diagnosis including depression.

The professionals adopted a judgment-free tone with the family who were doing the best they thought they could under the circumstances. The family was simply not aware of possible treatable reasons for their mother's escalating problematic behavior, and did not know where to turn for help sooner. The nurse contacted the patient's primary care physician, who noted he had not seen the patient in his office in over 2 years. The physician supported the plan of action, and an emergency admission to an inpatient unit that specializes in assessing complicated medical situations, generally for older adults, was facilitated.

Upon inpatient medical evaluation, diagnoses were made including: dementia, mostly likely of the Alzheimer's type, early onset, dehydration, and a urinary tract infection. The family received support and assistance with a Medicaid application for long-term-care services. They were also referred to counseling services at the local Department of Social Services office. The family attended several support group meetings at the local Alzheimer's Association chapter. The patient was ultimately deemed unable to return home and was transferred to a long-term-care facility within 10 miles of her home.

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Identifying Family and Caregiver Education Needs

Home healthcare professionals have several items to consider when working with families and caregivers under these circumstances. Are caregivers aware of diagnoses? Many families understand that their loved one may have diabetes or a heart condition. When memory becomes impaired, and behaviors may become problematic, many caregivers are never made aware of a diagnosis of dementia. Physicians may be reluctant to offer a specific diagnosis, so as to not distress the patient or the family, or because diagnosis of dementia is still not definitive. Moreover, treatable medical conditions, polypharmacy, and changes in activities of daily living may accelerate memory issues and behavioral concerns. Please see Table 1 for a specific assessment process. If a diagnosis of dementia has been made, are caregivers aware that treatable secondary symptoms including depression, agitation, and paranoia may result in withdrawal or combative behavior? In addition, patients with aphasia may be unable to clearly express when they are in pain or uncomfortable, or that simple environmental issues, such as a cold bathroom or a bath water temperature that is too hot or cold, may result in agitation or combative behaviors. Many PWD who may respond negatively to a bath, may be more comfortable in a swimming pool, hot tub, or taking a sponge bath. Home healthcare professionals who have experience working with PWDs may be able to provide guidance and solutions to basic behavioral issues. Identifying problematic behaviors and understanding when they may need to be addressed is paramount in getting timely help (Table 1).

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Implications for Home Healthcare Professionals

How, When, and Where to Get Help

Home care professionals employed by an agency are supervised by that agency, and should be aware of what behaviors and patient changes need to be reported and assessed further. However, many patients are cared for at home by their families, as was Mrs. M, or by private caregivers hired by families. Often, there is little understanding of the underlying causes of problematic behaviors and little knowledge about how to find resources and assistance to manage them. Black et al. (2013) indicated that 99% of patients and 97% of caregivers had unmet needs, highest among them related to home and personal safety (including fall and wandering management), medical care, and evaluation and care of people with dementias. Other categories that scored high among unmet needs including information about finances (including Medicaid, Medicare, and long-term-care placement), legal issues (related to advance planning, power of attorney documents, and guardianship), and meaningful activities for patients that often can provide respite and objective feedback for family caregivers. Caregivers also lacked information in the areas of education, mental healthcare, and supportive referrals. Stunningly, 31.5% of the patients in the study, who were evaluated at the time of the study and found to have a dementia, had no prior dementia assessment. Forty-two percent of the patients and caregivers in the study had eight or more unmet needs. Minorities and people with fewer financial resources scored among the highest with regard to unmet needs.

Falls, wandering, and unsafe environments may contribute to increases in need for costly medical attention, premature placement in long-term-care facilities, and death (Dong et al., 2009). Lack of education regarding the need for basic medical care may create situations where comorbid illnesses create pain, changes in sensorium, and costly medical interventions. Indeed, Mrs. M's agitation and combativeness may have been related to the pain experienced as a result of her urinary tract infection. Many older adults may not attend to or be able to pay for basic vision and dental care. Left unattended, these medical issues can cause behavioral and sensorium complications.

If the patient has not visited with his or her primary care physician in the last 3 to 6 months, an appointment should be scheduled. If a visit does not occur, a caregiver should call the physician to ask for advice and suggestions. Generally, a physician or staff can help to problem solve based on their experience, and make appropriate first step referrals. Many caregivers are simply unaware of county-based services, such as a Department of Social Services, and specifically Area Agencies on Aging that exist to answer questions, make referrals, and intervene when situations are dangerous, as was the case with Mrs. M. Often, the referrals these agencies make include support and/or respite for the caregivers. The experience of community peers in support groups who are dealing with similar circumstances may provide some of the most helpful suggestions and advice.

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Abuse and Neglect

Unfortunately, many home healthcare professionals receive referrals for cases where abuse may be evident. The Elder Justice Coalition defines this as physical, emotional, and financial abuse, but also includes abandonment and neglect (including self-neglect). Moreover, the Coalition and researchers report that over six million older adult Americans may fall into one or more of these categories of abuse and neglect; approximately 1 out of 10 adults over 60 (Lachs & Pillemer, 2015). Notably, PWD experience higher incidents of abuse (Cooney et al., 2006; Lachs & Pillemer; Vandeweerd & Paveza, 2005). However, these may be among the most underreported statistics. Because of the nature of the disease, PWD are often not accurate or timely reporters (Cooper & Livingston, 2016). APS, usually a unit of an Area Agency on Aging, will intervene to investigate incidents of abuse and/or neglect, as well as suspected financial exploitation. APS staff are often Master's prepared social workers with experience in this area. Although not consistent from state to state, older adult abuse and neglect, including self-neglect, may rise to the status of mandatory reporting, as it does in child welfare cases.

Many people do not know that most APS units will field hypothetical case questions. If someone is unclear whether abuse or neglect is occurring, a citizen may call anonymously and offer the description of the situation. Therefore, caregivers do not need to guess what crosses the boundaries into abuse and neglect. Often these case descriptions are called in by concerned neighbors, friends, and so on (Table 2 for more resources). The physical signs of abuse make it hard for home healthcare professionals to ignore. For obvious reasons, neglect, especially self-neglect, may be more insidious, however, and therefore be significantly underreported and underresearched (Table 3).

Self-neglect may be the most often encountered form of abuse and neglect in home healthcare. A very informative article on self-neglect by Leff and Sonstegard-Gamm was published in Home Healthcare Nurse in 2006 and may be helpful in attempting to understand the nebulous concept of self-neglect. The National Center on Elder Abuse (NCEA) reported that these cases may make up as many as 50% of the reports made to APS in many states, and may be associated with increased mortality within a year of report (Dong, 2015; NCEA, n.d.). This may be due to failure to integrate older adults into everyday life. Many older adults live alone with little oversight or companionship. Moreover, these patients may be succumbing to mild cognitive decline, and much like the slow drip of a leaky faucet, these patients may skip medications, fail to attend to hygiene, and exhibit very limited palates leading to worsening nutritional status. All of these issues contribute to exacerbation of underlying disease conditions (e.g., hygiene/nutritional issues and diabetes), and create a downward spiral from which many older adults do not recover.

Of course, people have the right to refuse medical intervention or home care. However, home healthcare professionals have to be able to discern when the right to refuse care becomes an issue of incapacity (i.e., inability to make appropriate decisions about care). Because detection of self-neglect requires detailed, longitudinal assessment and excellent clinical antenna, it is not uncommon to dismiss the signs. Many home healthcare professionals are trained to recognize specific signs and risk factors of self-neglect (including age, number of diagnosis, social status, and level of cognition). Assessment tools, such as the Self-Neglect Severity Scale, which measures patient environment, hygiene and ability to function, and other assessment may be the most informative (Kelly et al., 2008).

Financial exploitation, a form of abuse, offers a real challenge to family members. It is among the most commonly reported forms of abuse, and older adults may be completely divested of financial resources when reported (Acierno et al., 2010). At that point, the funds are usually unrecoverable. Unless and until an older adult is found mentally incompetent in a court of law, he or she has the freedom to make his or her own decisions. Unfortunately, financial abuse may be perpetrated by a trusted caregiver or family member. If a patient has some awareness of this, he or she may be reluctant to report, because older adults are often dependent upon the exploiting family member and fear retaliation or loss of support. Moreover, unscrupulous individuals in the community may prey upon PWD using lottery and home repair schemes, often targeting lonely, socially isolated, and often confused older adults.

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Decisional Capacity and Incompetence

At times, people such as Mrs. M are so disabled that, even following a thorough medical evaluation, her disease course seems irreparable. Many people are simply unable to make decisions on their own behalf. In our culture, we hold dearly this right to make our own decisions—the right of self-determination, but this attitude is not just an accepted cultural more, it is deeply embedded in U.S. law. Therefore, denying or depriving someone of their ability to make their own decisions, including about healthcare, is a legal issue, not just a medical issue.

Decision-making capacity is evaluated by physicians. Referred to as “capacity,” physicians ask questions that seek to determine judgment not memory, although the two may be correlated. Questions related to functioning: “Tell me what you believe is wrong with your health now?; what is treatment likely to do for you?; what do you believe will happen if you do not have treatment?; if these benefits or risks occurred, how would your everyday activities be affected?; tell me how you reached your decision?” are all commonly asked questions that seek to determine whether a patient can balance benefits and harms (Lo, 2003, p. 1). Home healthcare clinicians may consider asking these questions of patients in their homes prior to making a referral to APS.

Serious situations may ultimately be amenable to the assignment of a legal guardian, someone who is legally nominated to make decisions on behalf of the person in question. The circumstances must be dire (i.e., people are unable to meet their basic needs or make decisions on their own behalf), a physician must evaluate the person's ability to make these decisions, and a local court must ultimately decide. However, when the situation warrants it, guardianship helps to support people in maintaining some quality of life, especially if the person in question is “unbefriended” (i.e., the person in question has no support network). The legal guardianship process is generally begun with a referral to APS.

Decision capacity evaluations are made available to appropriate legal professionals, usually through family or orphans' courts, where adjudications of incompetence are evaluated. Once this decision has been made, someone is assigned to act as legal guardian, of the person, of the finances, or of both person and finances. Unfortunately, there is often no one availability to act as legal guardian. This situation will continue to grow as we age in the United States. Some communities have developed volunteer guardian programs where community members accept legal responsibility for their neighbors (Jones, 2016; Jones & Pastor, 2015). These volunteers receive training and supervision, especially in the use of a decision-making process called substituted judgment (i.e., inferring what a patient may want under certain circumstances rather than what you, as the legal guardian, may wish for yourself under the same circumstances; Orr, 2004).

Mrs. M's situation, although extreme in both patient and family behavior, is not unusual or rare. Unfortunately, adult children and spouses are most often the perpetrators of older adult abuse (Amstadter et al., 2011). Many of us who provide care at home to PWD realize how incredibly trying this care is. Regardless of how well-meaning a family caregiver may be, stress, lack of support and knowledge, and isolation may contribute to incidents of abuse and neglect by family caregivers. Formal respite resources are not commonly available. As noted in Mrs. M's case, family members may simply not know what to do or where to turn, and are indeed, unintentional abusers, perhaps due directly to caregiver burden or burnout. Community resources may be available. Many senior centers, sponsored by area departments of social services have telephone help lines and “phone trees” (volunteers calling older adults). Home healthcare professionals need to be knowledgeable about community resources and how to access them, and can become experts in assisting families to locate appropriate services to manage difficult home situations for vulnerable older adults. Moreover, it is very important to note that family education and planning provided by nurses and other home healthcare professionals may be influential in preventing situations from becoming as dire as Mrs. M's case, an outcome that would be welcomed by all.

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References

Acierno R., Hernandez M., Amstadter A., Resnick H., Steve K., Muzzy W., Kilpatrick D. (2010). Prevalence and correlates of emotional, physical, sexual, and financial abuse and potential neglect in the United States: The National Elder Mistreatment Study. Journal of Public Health, 100(2), 292–297. doi:10.2105/AJPH.2009.163089
Alzheimer's Association. (2016). 2016 Alzheimer's disease facts and figures. Retrieved from http://alz.org/facts/overview.asp
Amstadter A., Cisler J., McCauley J., Hernandez M., Muzzy W., Acierno R. (2011). Do incident and perpetrator characteristics of elder mistreatment differ by gender of the victim? Results from the national elder mistreatment study. Journal of Elder Abuse & Neglect, 23, 43–57. doi:10.1080/08946566.2011.534707
Black B., Johnston D., Rabins P., Morrison A., Lysketsos C., Samus Q. (2013). Unmet need of community-residing persons with dementia and their informal caregivers: Findings from the maximizing independence at home study. Journal of the American Geriatrics Society, 61, 2087–2095. doi:10.1111/jgs.12549
Cooney C., Howard R., Lawlor B. (2006) Abuse of vulnerable people with dementia by their carers: Can we identify those most at risk? International Journal of Geriatric Psychiatry, 21(6), 564–571. doi:10.1002/gps.1525
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Jones A. L. (2016). They don't have anyone: An exploratory study of volunteer legal guardians in the community. International Journal of Volunteer Administration, XXXII/1 (December 2016).
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Kelly P. A., Dyer C. B., Pavlik V., Doody R., Jogerst G. (2008). Exploring self-neglect in older adults: Preliminary findings of the self-neglect severity scale and next steps. Journal of the American Geriatrics Society, 56(Suppl. 2), S253–S260. doi:10.1111/j.1532-5415.2008.01977.x
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Lo B. (2003). Resolving Ethical Dilemmas: A Guide for Clinician (2nd ed.). Hagerstown, MD: Lippincott Williams & Wilkins.
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