AAGP Position Statement: Family and Caregiver Counseling in Dementia: Medical Necessity
Adopted by the AAGP Board of Directors, February 2001
Position 1: Family and caregiver counseling is medically necessary for the care of patients with dementia.
Rationale: Family members and other caregivers often perform a vital role in the delivery of behavioral health care to patients with dementia. They must often serve as the observers and reporters who can provide information essential for the clinical evaluation of patients with dementia; and, in the course of their day-to-day contacts with patients, they are often the persons responsible for implementing behavioral treatments that are prescribed for patients with dementia. As such, physicians must rely on input from family members and caregivers when conducting their assessments and prescribing treatments for patients with dementia; and family members and other caregivers must receive guidance from physicians to observe, monitor, and manage the behavioral health of the demented patient.
The information flow between caregivers and physicians is an essential part of the treatment paradigm for providing reasonable and appropriate care for dementia patients. Caregivers may include family members or other at-home care providers, some of whom may be paid and others who may be drawn from the community of neighbors and friends who regularly assist the patient. These caregivers are not dementia specialists and often need assistance from the patient’s medical providers to understand the illness and to provide safe and effective care. The medical providers must also rely on the caregivers to accomplish the required medical and psychiatric evaluation and management. Physicians have the opportunity to examine patients during face-to-face contacts, but thorough clinical evaluation of patients must also incorporate observations made around-the-clock in the patient’s residential setting. Caregivers make observations and furnish information that is often crucial to the clinical assessment of dementia patients, in a way that is usually not needed for the provision of medical care to patients who are cognitively intact. Similarly, physicians can prescribe treatments and make recommendations about behavioral interventions; but they must rely on caregivers for implementing those treatments and behavioral interventions through their day-to-day “front-line” contacts with patients between physician visits.
- Memory Deficits. One of the hallmarks of dementia symptoms is memory loss. During the course of the illness, memory loss and confusion increase, and patients become unable to furnish accurate, reliable, or complete information about their clinical condition. They often cannot recall recent symptoms, signs or health-related events. Good patient care requires corroboration and collateral information from other informants, usually family members or other caregivers, whenever it is available. This approach takes more time, but involving the care provider/family as a usual component of dementia care should be the standard rather than the exception.
- Language Impairment (Aphasia). Language impairment frequently occurs in dementing disorders. In Alzheimer’s dementia, language becomes impaired in all patients as the disease progresses. These patients develop difficulty finding the words to express themselves or may use the wrong words without being aware of their errors (expressive aphasia). Caregivers are crucial in this situation, literally speaking for or adding clarity to what the patient may be trying to express. As the illness progresses, patients become unable to comprehend the meaning of spoken words. They might not always understand the questions being asked or the requests being made of them (receptive aphasia). Many times the caregiver must learn to use alternative means to communicate, relying on visual cues, gestures, or facial expressions; and can use these methods to facilitate communication of essential clinical information to the medical provider.
- Observation of Behavior. Behavioral signs or changes occur often during the course of a dementing illness, and are sometimes the only manifestation of a medical, psychiatric, social or environmental problem experienced by a patient with dementia. As noted above, memory and language deficits interfere with patients’ ability to communicate with physicians about their symptoms and the sources of their distress. Patients with dementia often lack awareness or insight into their behaviors, and are unlikely to report their own behavioral disturbances. A caregiver who knows the patient and has observed the patient outside the context of the physician visit may be able to describe behaviors not reported by the patient and not observable during the physician’s examination. In addition, the caregiver may be able to provide information about the context or correlates of the behavioral symptoms that cannot be observed or inferred during the physician visit. This information is essential for accurate diagnostic assessment, which, in turn, is necessary for prescribing appropriate treatments.
- Caregiver-Patient Interactions. Appropriate caregiver responses depend on the caregiver’s understanding of the illness and attributions for behavioral disturbances. A caregiver who misunderstands the illness or misinterprets patient behavior often becomes overwhelmed by caregiving responsibilities. This often results in inappropriate caregiver responses, which may exacerbate the patients behavioral disturbance, leading to increased agitation (including resistance to care and physical combativeness). This situation, in which the caregiver may feel threatened or may be injured by the patient, increases the risk of elder abuse. For this reason, caregiver counseling is medically necessary for the assessment and appropriate, safe management of the patient’s behavioral symptoms. When counseling results in safe and effective caregiving, injury can often be avoided, function can be improved, and patients may safely remain in their homes for longer periods of time than would otherwise be the possible.
- Maximizing Functional Abilities. Due to cognitive impairment, dementia patients have a decline in functional abilities. The problem begins with instrumental activities of daily living (IADLs), i.e., more complex activities such as household management tasks, handling finances, and driving. As the illness progresses, patients become unable to perform basic activities of daily living (BADLs), i.e., simple self-care tasks such as dressing, personal hygiene, and toileting. Caregivers can be counseled in cognitive, environmental, and behavioral strategies to supervise and assist patients in performing IADLs and BADLs, with the goal of helping patients attain the highest level of function possible within the limits of their cognitive capacity. If caregivers are counseled to recognize the extent of preserved versus impaired function, they can help patients function without unnecessary restrictions and maintain optimal levels of autonomy at each stage of their illness. Counselling caregivers about these strategies enables them to help patients continue to exercise abilities that would otherwise quickly become lost. By fostering the patients’ own remaining abilities, caregiver burdens may be reduced, and it may be possible to avoid premature institutionalization from caregiver burnout.
- Avoiding Unnecessary Medications/Hospitalization. When a dementia patient becomes upset or agitated, the patient’s behavior may become very distressing, even frightening to the caregiver. In these situations, caregivers commonly look to the physician to medicate, hospitalize, or institutionalize these patients. In some instances, counseling caregivers to use effective strategies to reduce dysfunctional or dangerous patient behaviors may also alleviate caregiver distress that leads to crisis. Counseling to improve caregiving skills may allow the patient to continue living safely at home or in the least restrictive environment, averting undue caregiver burnout, dangerous situations, or inappropriate and costly hospitalization or institutionalization.
- The Ongoing Need for Education/Guidance. Just as newly diagnosed diabetes patients and their caregivers are counselled to avoid the preventable complications of that illness, a similar approach to dementia management should be adopted. Dementia, however, is an illness that changes over time. Caregivers, even when competent to manage a certain stage of dementia, may be unprepared for the deterioration and changes in cognition, function and behavior that occur as the illness progresses. So, unlike the case of diabetes, in which caregiver education may be a one-time event, continued caregiver assistance and counseling are medically necessary throughout the course of the illness for patients with dementia.
Position 2: Appropriate treatment of patients with dementia often requires family or caregiver counseling at visits without the patient present.
Rationale: During early, middle, and late stages of dementia, there are often clinical situations in which patients are unable to participate in counseling regarding behavioral health care. For example, patients with mild or moderate cognitive impairment may still be able to understand upsetting information about their condition, but may be too impaired to put this information in perspective or participate in problem-solving or other adaptive responses. Other patients may misinterpret information, or may have paranoia that prevents them from receiving and evaluating information accurately or without excessive fear. In all these situations, patients may become unnecessarily distressed or behaviorally disturbed. In some cases, the psychiatric problem that requires care also renders the patient too frightened or paranoid, agitated or physically aggressive to be safely or comfortably transported to their medical appointment to receive treatment. In these cases, it is critical that caregivers be seen by the clinician, even without the patient present, to permit the conduct of the behavioral assessment, and to participate in care instructions or medication changes that can be implemented by the caregiver. In other cases, families and caregivers may specifically request meetings without the patient present so that they may discuss the illness, the prognosis, or the treatment (including behavioral management) without causing the patient to become more distressed or agitated. In these situations, having the patient present for the session is clinically contraindicated. Thus, counseling sessions with family or caregivers, without the patient present, are often medically necessary for the appropriate treatment of patients with dementia. This type of intervention is needed to decrease the patient’s distress, manage behavioral problems, improve caregiver safety, and avoid crises requiring emergency interventions such as hospitalization.
Position 3: The current reimbursement system does not provide adequate coverage for psychiatric services that are necessary for patients with dementia whose family members or other caregivers are directly involved in managing their behavioral health care. Counseling for caregivers of patients with dementia should be considered medically necessary by CMS and Medicare carriers, and should be a covered service. Coverage should include caregiver visits without the patient present when direct patient involvement in the session is not possible or is clinically contraindicated.
Rationale: Currently, most Medicare carriers do not reimburse clinicians for time spent counseling the family or caregiver, especially if the patient with dementia is not present, because this type of clinical service has not been considered medically necessary. This policy discriminates against patients with dementia, since it prevents them from receiving medically necessary psychiatric care, as described in the rationale for Positions 1 and 2.
Comment: The CPT code 90847, “family psychotherapy without the patient present,” has not usually been considered medically necessary by the Medicare carriers and therefore, is not usually considered a reimbursable service. However, in rare instances when it is considered a reimbursable service, there is sometimes disagreement between the clinician and the carrier over what constitutes “psychotherapy.” Most caregivers need the clinician to assist them in providing care by helping them understand the dementing illness, its management, and prognosis. In particular, the clinician must often provide direct supervision of the caregiver who implements specific behavioral treatments at home in the course of their daily contact and care of the patient. This type of supervision might not be considered “formal” psychotherapy; however, it is an integral part of the treatment of most patients with dementia. In essence, the caregiver is the agent who delivers the therapeutic intervention, according to a behavior therapy plan, at the direction of the physician.
Another coding option for the clinician delivering family counseling services has been the psychiatric medication management code, 90862. This code is appropriate to use for medication monitoring and adjustments for geriatric patients, but often does not capture the service provided or the time needed to meet with both patients and their caregivers to understand and treat a complicated condition.
The final coding option is the Evaluation and Management codes, but again these codes mandate the patient’s presence to be considered medically necessary, and many Medicare carriers require that the counseling be directly focused on the patient. Such a focus is not always possible as the illness progresses and patient are no longer able to contribute to or understand the counseling.
These confusing and inconsistent Medicare practices jeopardize the care of many dementia patients since they provide a disincentive for clinicians to spend time with the care providers as part of caring for dementia patients. Without the information these caregivers can provide, these fragile patients are at risk for inaccurate assessment and for poor clinical outcomes. Medicare carriers and CMS must uniformly recognize family psychotherapy, both with and without the patient present, as medically necessary and appropriate for the care of patients with dementia; and they should accept the family psychotherapy codes for these services, which should be covered. Alternatively, family counseling should be routinely accepted as part of the Evaluation and Management codes, even when the patient is not present for clinical reasons.