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Managing family dynamics when caring for older adults

Gross, Sarah J. MEd, JD, LLM

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doi: 10.1097/01.NURSE.0000654040.24421.7f
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CARING FOR OLDER ADULTS may involve healthcare, financial, social, and legal decisions made by or on behalf of the patient. Geriatrics is a distinct branch of healthcare that deals with the health concerns of aging patients. Nurses address patient needs and honor the decisions of their older adult patients.

Families may simply want to ensure that their aging relative is receiving the best possible care and may communicate with providers frequently. In some cases, however, the nurse may encounter dissension within the family over healthcare decisions. When an older patient is diagnosed with a cognitive impairment, the propensity for family involvement can be even greater.1-5 As such, healthcare professionals may be tasked with serving the needs of both the patient and the family. This article addresses the impact of neurocognitive disorders on older patients and their families and recommends mediation as a resource for nurses to better address potential conflict.

Capacity and incapacity

Capacity is an important aspect of mediation. It refers to a nuanced and ongoing determination of whether, and to what extent, an individual is able to partake in mediation.4 It is often presumed that older patients will have the capacity to participate and voice their thoughts and preferences.4 An adjudication of legal incapacity, however, does not necessarily indicate an inability to mediate.4,5

In caregiving and decision-making, legal capacity refers to a patient's ability to manage his or her financial and personal affairs. Depending on the jurisdiction, a probate court may grant a guardian or conservator authority to manage an incapacitated individual's finances and/or personal care. Courts determine legal incapacity based on medical affidavits and testimonies, capacity declarations, and/or neurologic reports. Those determined by the court to lack capacity and assigned a guardian or conservator are considered legally incapacitated.5

If older patients appear to have diminished or unclear levels of capacity, mediators may determine whether certain accommodations will enable effective participation. They also ensure the presence of attorneys; social workers; geriatric care managers; patient advocates such as guardians ad litem or court-appointed persons who act on behalf of an incapacitated adult; or other surrogates who are able to speak on the patient's behalf.6 When a patient is legally incapacitated, mediators are responsible for ensuring a proxy to express the patient's best interests, values, and preferences.

When older patients cannot make their own decisions due to incompetence or mental incapacity, providers should refer to any available advance directives, such as living wills and medical or durable powers of attorney for healthcare. Living wills state an individual's healthcare and end-of-life preferences; medical and durable powers of attorney identify a representative to make all healthcare-related decisions for the patient.7

Typically, healthcare professionals must also address the needs of the family, taking into account their preferences. For disagreements between patient families, attorneys, or representatives, families may have to go to court for guardianship or conservatorship. Healthcare professionals should defer to the authority of court-appointed guardians or conservators to represent the interests of patients who lack capacity.7

Person-centered care

In caring for older adult patients, specifically those with mild or major neurocognitive disorders (MNDs) such as dementia, the concept of serving the patient by honoring his or her preferences and incorporating other resources or individuals is known as person-centered care.8 This philosophy is built around the needs of individual patients and contingent on interpersonal relationships.8 It has become increasingly common in providing care for aging patients with indications for or a formal diagnosis of MND, such as Creutzfeldt-Jakob disease, Lewy body dementia, Alzheimer disease, frontotemporal dementia, Huntington disease, normal pressure hydrocephalus, posterior cortical atrophy, Parkinson disease dementia, vascular dementia, mixed dementia, Wernicke-Korsakoff syndrome, and limbic-predominant age-related TDP-43 encephalopathy.9

Person-centered care for patients with dementia advocates a whole-team process that honors their wishes and constitutionally protected right to self-determination to the greatest extent possible, even in the presence of diminished capacity. It also incorporates the guidance and perspectives of family members, healthcare providers, caregivers, and other stakeholders. Following research by gerontologist Tom Kitwood in the 1990s, this model supports a sense of personhood in patients through relationship-based care, individualized activities, and guidance for providers and caregivers.8,10 It represents a shift away from the traditional healthcare model in favor of personal choice and autonomy.8

The Centers for Medicare and Medicaid Services (CMS) embraced person-centered care in its 2016 Quality Strategy to optimize health outcomes, with a goal to “strengthen person and family engagement as partners in [patients'] care” and ensure that healthcare delivery incorporates patient and family preferences.11 CMS encourages engagement by promoting strategies that honor self-determination and foster an environment in which patients can create health and wellness goals that align with their values and preferences.

This approach focuses on a collaborative team effort, goal setting, decision-making, and care management. Patients, families, and other stakeholders are given resources and support in decision-making to “manage their health and wellness, navigate the full span of the health care delivery system, and make their own informed choices about care.”11

In supporting family participation and partnership with healthcare professionals, person-centered care highlights a multifaceted caregiving model in decision-making. As providers must be increasingly sensitive to family dynamics in caring for older patients, this approach could be described as person- and family-centered care.

Cognitive impairments not only affect patients, but also their families. Caregiving places a strain on relationships, particularly when a family member must make healthcare decisions on behalf of the patient. Under these circumstances, disagreements may arise between multiple family members with divergent opinions, especially when no advance directive is in place or decision-making documents conflict. In the author's experience, this may include situations in which two parties with valid, competing advance directives each seek decision-making authority.

Conflict may also arise as families attempt to define new decision-making arrangements, often with the perception that one family member is providing insufficient help. Other disagreements may center around care coordination, patient needs, and the nature of the illness, as well as spillover from longstanding emotional issues in the family.3 Healthcare professionals may be confronted with these family dynamics and require additional tools and resources to better serve their aging patients.

Mediation and family conflict

Family conflict in the care of an older patient correlates to an increased caregiving burden on family members whose aging relative has been diagnosed with an MND. Alzheimer disease is a progressive brain disease that causes problems with memory, thinking, and behavior.12 It is the sixth-leading cause of death in the US.12 Additionally, it is estimated that between 50,000 and 60,000 people in the US have frontotemporal degeneration, the most common form of dementia for individuals under age 60.13 As such, it is increasingly important for providers to be informed and up-to-date on the range of cognitive impairments that may affect their older patients.

The aging process comes with some degree of cognitive impairment for many older adults, ranging from occasional forgetfulness to an MND. Aging patients often approach this transition precariously, without knowing the effect of a cognitive impairment on their future. Increased cognitive deficits may cause older patients to feel shame or distress. They may be aware of their cognitive impairment and experience anxiety, panic, anger, and a growing sense of uncertainty. Alternatively, they may overcompensate for declining cognition and attempt to conceal it to assert their independence. In doing so, older adults may struggle in managing activities of daily living without appropriate care. Family support and understanding is especially important for patient well-being during this time.1

For families, this transition is also fraught with difficulty and uncertainty as they recognize changes in their aging relative's behavior. Their response to a diagnosed cognitive impairment may range from an impending sense of responsibility to a sense of fear and loss. Families want to provide care for their aging relative, but the burden of care can be overwhelming, especially when they lack outside support.2

Providing care may require families to redefine their dynamics to accommodate the patient while striving to maintain balance. Even with assigned responsibilities, they may struggle to define the parameters of care, leading one family member to consolidate decision-making power.2,14 This can be problematic, inappropriate, and even unsafe in clinical decision-making. For example, disputes about whether to alter or withhold prescribed medications require provider input.15

Family members may also begin making decisions without first obtaining a cognitive evaluation for their aging relative, leading to disagreements and potentially causing delays in care. For example, one sibling may believe an aging parent is normal and lucid, while the other believes he or she is incompetent. A clinical evaluation to rule out treatable causes of transient delirium that can present as memory loss, such as urinary tract infections or dehydration, would help to resolve this.15

Without a clinical evaluation, conflicts may ensue due to lack of communication and consensus, and negative family relationship patterns may manifest over disagreements regarding care decisions.3

Caregiver strain

For many families, caregiving leads to disagreements that exacerbate caregiver burden, which refers to the physical and emotional toll of caring for a loved one, and caregiver strain, which refers to the exacerbated effects of caregiver burden due to perception of underappreciation.16 These can negatively impact the health of both the caregiver and the patient. When an adult child assumes responsibility for an aging parent, the shift in role from child to caregiver is stressful due to criticism, high demands, and unwanted or unhelpful advice.

Sibling support is often expected and appreciated, but tension between siblings may overshadow or undermine any emotional support offered.14 Siblings navigating care decisions may struggle with conflict. A parent's illness and mental decline has the potential to rekindle sibling rivalries as they compete to determine who will be in charge.17 As they vie for decision-making authority, they may act against the best interests of the patient. The transition to caregiving may add to tension, as one sibling may be perceived as the preferred caregiver while the other(s) feel undervalued or unappreciated.14

Family members dealing with interpersonal conflicts may be unable to communicate effectively, inhibiting their ability to care for their aging family member and increasing family tension. This could potentially delay the care plan and jeopardize the older patient's well-being.3

The likelihood for conflict increases in large or blended families with multiple siblings as family members take on new responsibilities. These arrangements inevitably disrupt the preexisting family dynamics and status quo. Changes such as arranging care for an aging parent may place strain on families as they struggle to adapt to decisions that interrupt their established routine.18

Consequently, shifts in family dynamics following the diagnosis of a cognitive impairment may have a “butterfly effect” that impacts patients, immediate and extended families, and the healthcare team. The butterfly effect refers to the notion that smaller events may have unpredictable consequences, leading to comparatively larger events.19 As such, the nursing staff can become caught in the crossfire during family conflicts. When patient care is impaired or interrupted, healthcare professionals can draw on outside resources such as mediation for assistance in smoothing the transition to person- and family-centered care.

The role of mediation

Mediation can support person- and family-centered care by providing a forum in which a neutral third party facilitates communication and decision-making to resolve conflicts. A mediator works to understand family dynamics and the available resources to meet the needs of older patients.20 (See Becoming a mediator.)

Mediation in family caregiving of older patients is defined as “all mediation in which participants address issues that occur as a result of life cycle events, transitions, and/or losses often associated with aging and dying.”21 These mediators step in during transitions to help the family understand issues, resolve conflicts, and make informed healthcare decisions for their aging relative.

In the author's experience, mediation may occur under various circumstances such as when no legal decision-making documents are in place. Mediators may work with all parties involved to determine an appropriate representative under powers of attorney and advance directives and to refer the parties to an attorney to establish these documents.

In circumstances with undisputed legal decision-making documents in place, these should be followed when resolving conflicts. If these documents are under dispute, such as in situations with two valid, conflicting documents, mediators may divert from what is stated and redefine decision-making representatives.

The mediation process is sensitive to the complex emotions involved in these situations and offers the opportunity for mutual understanding. It enables an older patient's voice to be fully heard and respected, protecting their rights and integrity and incorporating as many of their preferences as possible. This forum provides a secure environment and encourages participation from all parties regarding patient care, including treatment options and safety concerns. Through mediation, families gain access to relevant resources, as well as input from the healthcare team to assist in the decision-making process.20

By facilitating discussion and de-escalating conflict, mediators help to preserve family relationships and build connections to community resources, allowing providers to deliver quality care. Community resources may include care managers, adult day programs, home healthcare providers, and attorneys. Mediators also ensure that families are communicating effectively with the nursing staff.11 This allows nurses to provide care and select treatment options. If further disagreements arise, mediators are available to facilitate communication.

Inappropriate mediation

Although mediation is generally an appropriate resource for families and patients, mediation may be inappropriate in some circumstances. For example, cases involving high-conflict family dynamics may result in an impasse. Additionally, some circumstances may involve an imbalance of power, such as when patients are unrepresented or not appointed counsel during a court proceeding for guardianship or conservatorship. This can create an uneven bargaining table and result in patient rights being taken away without an understanding or agreement that aligns with their needs and preferences.22

Mediators can implement measures to remedy the situation and ensure that the patient is represented, but it may not be appropriate for the mediation to move forward without corrective action. Similarly, those unwilling or unable to participate may change the intent of mediation, making it unproductive. If contentious family members are averse to good-faith compromises, they may misuse mediation as a forum to vent, escalate conflict, and restate absolute positions. This setting can negatively impact patients, who may begin to feel unheard or unsafe.

Mediation may be unproductive when parties are high-conflict and uncompromising despite their intentions to act in the patient's best interests. The mediation process occurs within a specific period of time, and this may be insufficient to help high-conflict parties implement a care plan. Chronic disputes such as siblings being pitted against each other may not be best served in the limited context of mediation.21 In these circumstances, mediators may not have the time and resources to address underlying conflicts, and mediation is more likely to reach an impasse.

Capacity also impacts appropriate mediation, as older patients who are legally incapacitated may be unable to participate. Even when they are experiencing cognitive impairment, patients have a constitutional right to self-determination. Mediators assess whether the degree of a patient's incapacity precludes his or her participation in mediation. Screening for capacity is complex, and mediators should consider multiple factors to determine whether the mediation can continue.4

Allegations of abuse, neglect, or exploitation are also indicators that mediation may be inappropriate.22 Mediators must be able to recognize abuse and decide whether to continue.21 If concerns regarding potential abuse have been raised, it is up to mediators to determine how the allegations will affect mediation. Threats and duress may affect open communication and decision-making, indicating that termination may be the best course of action. If the process poses serious safety and fairness concerns, the mediation must be terminated. The mediator may need to bring any suspicions of elder abuse to the attention of the court, the guardian/conservator, and the appropriate healthcare professionals.22 Patient providers are subject to mandatory state reporting requirements and must also screen for signs of abuse.23 For example, all healthcare practitioners are required to report known or suspected incidences of elder abuse in California.23

For cases in which mediation is inappropriate, families may be referred to suitable attorneys.

Finding a mediator

In person- and family-centered care, healthcare providers must be aware of and sensitive to family dynamics. Family preference is important when patients are diagnosed with MNDs, especially if they cannot express their individual care preferences. Disagreements can delay patient care, however, and mediators may be a valuable resource for nurses as they help with decision-making and ensure continuity of care.

The accessibility of mediation services is increasing, but many families and clinicians remain unaware of this resource. Mediators are primarily accessed through court-connected programs after a complaint or lawsuit has already been filed. For example, attorneys may recommend a mediator to help settle a contentious family conflict. If a family member files for guardianship or conservatorship over an aging parent, courts will typically recommend mediation. In some jurisdictions, however, mediation is court-ordered and mandatory. These agreements are then submitted to the court as enforceable terms to ensure compliance.

Additionally, mediation services are available through partnership with care managers and aging life care professionals who interface with healthcare professionals. Care managers may retain a mediator as part of their team and work together to rally the family around the aging patient. There are many law practices focused on legal services and conflict resolution involving older individuals, and healthcare professionals can locate mediators through law and mediation firms. Additionally, resources such as the Foundation for Senior Services list available mediators and other professionals by location.24

For mediation outside of court mandates and recommendations, mediators may draft agreements that include care plans, visitation schedules, and allocations of responsibility between family members. Often, these agreements include steps that require help from another professional, such as preparing advance directives and powers of attorney.

Whether referred through the court or not, mediators contact each participant to initiate the process and begin discussions to resolve each issue. The nature of mediation for older patients involves working with families through the transitions of aging. Mediators are available to manage, recalibrate, and resolve any current and future conflicts as necessary; for example, if some parties change their minds after a course of action has been agreed upon, resulting in a dispute.

Nurses and healthcare providers who are aware of family dynamics in serving the patient's best interests may also serve in a mediator capacity if mediation services are not directly available. They can recommend social workers, care managers, or others to address issues, as well as partner with the family and healthcare team to assist in developing a care plan. Family conflicts regarding an older patient's living will, power of attorney, and/or physician orders for life-sustaining treatment may arise, and clinicians can facilitate discussion and refer families to the appropriate resources to mitigate disagreements.

A valuable resource

Care for older patients with MNDs is a multifaceted field that requires healthcare professionals to serve the needs of patients, families, and other stakeholders in a person- and family-centered approach. Healthcare professionals must be able to address patient needs and mitigate circumstances that may delay or jeopardize care. To address complex family dynamics and potential conflict, mediation is a valuable resource that should be incorporated into existing models of person-centered patient care to strengthen care and decision-making for older patients with MNDs.

Becoming a mediator20,25

In family caregiving and decision-making for older adults, mediation is a process offered by a professional with advanced training and experience in the fields of geriatric care, healthcare, and elder law or conservatorship. Unlike healthcare professionals, there are no required standards of practice for elder mediators. Because of this, the paths to becoming a mediator may vary, and professionals may have diverse educational backgrounds such as psychology, gerontology, law, or education.

According to the standards established by the Association for Conflict Resolution, mediators must complete a course and additional advanced training specific to elder law and practice in addition to their degree. Mediators must have the skills and knowledge to:

  • support participation of older patients, even those with diminished cognition
  • address family conflicts
  • facilitate problem solving for multiple parties and complex group dynamics
  • connect participants to the appropriate resources, including assisted living communities, care managers, and healthcare teams
  • enable a workable caregiving structure that serves the best interests of aging patients.

Training for prospective mediators is available through university dispute resolution programs, as well as private training such as those listed by the American Bar Association.

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Keywords:

cognition; conflict; family dynamics; geriatrics; major or mild neurocognitive disorders; mediation; mediator; MND

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