Stefan is a 92-year-old man with major neurocognitive disorder due to Alzheimer’s disease, congestive heart failure with an ejection fraction of 20%, right hip fracture with a history of open reduction and internal fixation, hypertension, and chronic kidney disease stage 3 who presents with his daughter Rene. Rene, who had been working full time, became involved in her parents’ care 3 months ago after Stefan’s wife, Amélie, had a heart attack and was hospitalized for a week. Rene had to unexpectedly take time off from her job but now works part time from home so she can help care for Stefan and Amélie, who have moved into Rene’s home. Rene has no assistance and feels overwhelmed caring for both of her parents.
You refer Rene to a social worker to consider various options to assist with care for her parents. They discuss case management, home health services, respite services, and the local Program of All-Inclusive Care for the Elderly (PACE). Rene decides to hire home health services 5 days a week for 12 hours. At her next visit, she reports decreased caregiver stress.
Determining What Services Patients Need
As the population ages, living options for older people are increasing. When patients and caregivers consider the choices, they may easily feel overwhelmed by the variety of terms whose meanings, except for nursing homes and skilled nursing facilities, are not regulated. Given the complexity of the options, practitioners should consider at least a one-time consultation with a social worker, case manager, or local aging agency. Before the practitioner consults with these people, he should first answer two important questions: 1) What is the patient’s minimum required level of care (e.g., skilled nursing, help with medications and transportation)? 2) What private and public resources does the patient have that can be spent on his care? Which services are provided and which are not, as well as the payment mechanism, should be clarified in detail at every facility that is considered.
ASSESSING PATIENTS FOR SERVICE NEEDS
Assessing an older patient for his needs can seem complicated and overwhelming for the practitioner. To simplify this process, we recommend breaking down the assessment for service needs into three steps: 1) assess the patient’s functional abilities and gait, 2) assess the patient’s cognition and behavior, and 3) assess the patient’s finances.
STEP 1: ASSESS FUNCTIONAL ABILITIES AND GAIT
The first step in determining what services a patient needs or where he can live is to understand his functional abilities. Formal, detailed functional assessment of activities of daily living (ADLs) may require a referral to occupational therapy. However, you also can use short clinician-administered assessments, some of which require caregiver or patient ratings. Several such assessments of ADLs are summarized in Table 14–1.
Number of items
Barthel Index of Activities of Daily Living
Assesses mobility and ability to perform self-care
Patient or caregiver
Instrumental Activities of Daily Living
Measures complex functions correlated with independent functioning
Patient or caregiver
Katz Index of Independence in Activities of Daily Living
Monitors ability to perform self-care
Caregiver or practitioner
Palliative Performance Scale
Assesses and monitors physical and functional status of a person receiving palliative care
In addition to these functional assessments for older patients, it is critical to assess the patient’s gait, which is a proxy for mobility and ability to function independently and often is an indication of physical and mental illness. The structured tools summarized in Table 14–2 can be used to assess an older adult’s gait.
Number of items
Berg Balance Scale
Assesses balance and predicts fall risk
Get-up and Go Test
Assesses gait and balance
Performance-Oriented Assessment of Balance
Performance-Oriented Assessment of Gait
One-third of all older adults fall each year, and one-fifth of all falls result in a serious injury (Centers for Disease Control and Prevention 2016). Because falls are a significant source of morbidity and mortality among older adults, a practitioner must ally with a patient and his caregivers to prevent falls (Tinetti and Kumar 2010). One important way to reduce the risk of falls is to complete an environmental assessment of the places where an older adult lives and frequently visits. An environmental assessment will include both a “diagnosis”—including an assessment of a patient’s footwear and an assessment of the structure of his dwelling (e.g., stairs, doorways, handrails, grab bars)—and a “prescription”—the removal of known obstacles (e.g., clutter, electrical cords, loose rugs), the provision of adequate footwear, a review of a patient’s medications, and, often, balance and gait training. Although occupational and physical therapists are often the community experts in these evaluations, several checklists have been designed for use by any practitioner. These assessments include the Gerontological Environmental Modifications Assessment (Bakker 2005) and the Check for Safety: A Home Fall Prevention Checklist for Older Adults (Centers for Disease Control and Prevention 2015).
STEP 2: ASSESS COGNITION AND BEHAVIOR
The second step to understanding where your patient can live is to make sure you have a thorough understanding of the patient’s current and potential future problems with cognition and behavior. This is important because you have to be able to help caregivers plan for the future. For example, a pleasant patient with early Alzheimer’s disease may not need a locked dementia unit immediately, but you should recommend that the caregivers focus on finding places that have locked units in their facilities. Then, in the event that the patient starts to wander, his caregiver can easily arrange for him to be moved to a locked unit without going through the placement process again.
The most comprehensive tests of cognitive and behavioral function are conducted by neuropsychologists. Neuropsychological testing for neurocognitive and psychiatric disorders usually includes a detailed clinical history based on information from the patient and caregiver, an objective assessment of the patient’s functioning prior to the onset of the mental health disorder, and a battery of tests to understand which disorders are contributing to the patient’s current clinical presentation. Neuropsychologists can carefully select tests on the basis of the clinical presentation and complaint, or they can use a fixed, comprehensive assessment. Neuropsychological testing is different from cognitive screens such as the Montreal Cognitive Assessment (MoCA) or the Mini-Mental State Examination (MMSE), which can be completed in only a few minutes. Neuropsychological testing may take anywhere from 2 to 6 hours. Neuropsychologists who have extensive experience working with older adults will generally keep the batteries on the shorter side or provide frequent breaks because they recognize that older adults will tire easily. Poor effort due to a patient’s exhaustion is a common reason for invalid test results.
A common complaint of many practitioners is that neuropsychology reports do not help them understand a patient with complex neurocognitive and psychiatric issues because the report comes back with “a laundry list of potential problems” that the practitioners already knew existed. The secret to getting back a report that helps you is to understand that neuropsychology testing is similar to a surgical operation. To increase the likelihood of a good outcome (i.e., getting a report that helps you), make sure you “prep” your patient by doing the following:
- Refer older patients to neuropsychologists who are board certified or board eligible, and preferably who have geriatric experience, to ensure a high-quality, valid assessment. (This is similar to when you refer your patients to a board-certified surgeon who is well versed in a highly specialized procedure.)
- Address all visual and hearing impairment problems beforehand because these can affect test performance.
- Send all records, including test results of brain imaging, prior to the assessment to give the neuropsychologist ample time to review the records and determine additional appropriate tests. Because of the anatomic detail provided, magnetic resonance imaging is significantly preferable to computed tomography scans.
- Do your best to effectively treat all psychiatric symptoms such as depression, mania, and psychosis.
- Minimize or stop a patient’s cognitively impairing medications, such as anticholinergics, benzodiazepines, and sedating pain medications, as well as excessive substance use, for at least 1 month prior to testing.
- Most importantly, write a clear question or statement listing potential diagnoses that you think might contribute to the patient’s problem. The following are not helpful referral questions: “Cognitive impairment?” and “Can this person drive or manage his finances independently?” A much better referral is something such as the following: “I am wondering whether my patient has major neurocognitive disorder, major depressive disorder, or bipolar disorder with depression. I am also concerned about his ability to safely drive and live alone.” Because many neuropsychologists design a test battery on the basis of the referral question or statement, the better worded your referral, the better the neuropsychologist can design the battery of tests and address your concerns.
When you receive the neuropsychologist’s report, do not feel overwhelmed by the jargon (e.g., “significant difficulties with executive function such as organization and planning”). Feel free to call the neuropsychologist about what the results mean in terms of the problems your patient is facing. Neuropsychologists are bona fide clinicians and will appreciate this call. Finally, these neuropsychology reports are invaluable for other specialists, particularly occupational therapists and geropsychologists. When you share these reports with these specialists, they can help you figure out what to do about the problems the neuropsychologist describes. For example, problems with organization and planning indicate that the patient is feeling overwhelmed by anything that requires multiple steps. Specialists may approach these problems in different ways. An occupational therapist may recommend using a checklist to complete a complex task as part of cognitive rehabilitation. A geropsychologist may decide to use problem-solving therapy so the patient feels less overwhelmed about how to solve a problem.
STEP 3: ASSESS FINANCES
The third step in determining where a patient can live is to arrange for a financial assessment by a social worker or case manager. Although social workers and case managers are tremendously helpful in figuring out which services patients qualify for, you can make the process go faster by having your patient and his caregivers collect all the paperwork about assets belonging to both the patient and the spouse (if there is one), including but not limited to bank accounts, retirement accounts, pensions, property, and any other sources of income. Patients should also locate basic identifying information documents, such as birth certificate and Social Security card, because they may need them when applying for Medicaid or completing social services applications. Bringing all of this paperwork to the first visit for a financial assessment will save your patient and his caregiver an extra visit.
CONSIDERING AT-HOME SERVICE OPTIONS
Case management is typically handled by a nurse or social worker who is responsible for coordinating and implementing a patient’s care plan to improve management of his chronic illness. A review by the Agency for Healthcare Research and Quality found that case management for older adults with complex chronic medical illnesses at best had only a small impact on patient-centered outcomes, quality of care, and resource utilization; however, patients with complex medical illnesses did feel that their care was better coordinated, and caregivers reported less depression and stress (Hickam et al. 2013). Case management is a highly heterogeneous approach; the most successful interventions include longer contact time with clients, face-to-face meetings, and integration with practitioners.
Health insurance may cover case management under special circumstances, but many times patients and caregivers will need to pay out of pocket to hire a geriatric case manager. If they do hire someone privately, it must be a person with an active license in his area of expertise and experience working with older adults.
Caregiving can be emotionally and physically exhausting. Because the judicious use of respite programs can prevent caregiver burnout, practitioners should discuss the availability of respite care early, instead of waiting until a caregiver burns out and the need for services becomes acute. The three major types of respite programs are home care services, adult day health centers, and brief stays at residential facilities. Home care services range from providing assistance with ADLs and light household chores to providing companionship. Adult day health centers offer supervised care for those who need medical and social services. Many of these centers provide transportation, meals, and some health-related services such as assistance with ADLs. Some also provide assistance for special populations, such as patients with dementia (National Adult Day Services Association 2016). Finally, certain residential facilities allow for brief stays ranging from a night, to a weekend, to a few weeks. Veterans who are eligible for VA medical care can receive respite services free of charge from the VA (U.S. Department of Veterans Affairs 2016). Otherwise, Medicare and many forms of health insurance do not cover most types of respite services (Alzheimer’s Association 2016).
PACE provide comprehensive medical and social services to frail adults age 55 and older who live in a PACE organization service area and have needs equivalent to those of persons currently in nursing homes (Medicaid.gov 2016a, 2016b). The purpose of PACE is to allow individuals who would normally enter a nursing home to stay at home instead. Most of the adults who are enrolled in PACE are dually eligible for Medicaid and Medicare; instead of the traditional fee-for-service model, capitation is used. Currently, there are more than 100 PACE programs in 32 states.
HOME HEALTH SERVICES
Home health services allow many older people to continue living at home, even as their physical need for care increases, rather than being placed in a long-term-care setting. The wide range of possible home health services includes occupational and physical therapy, speech therapy, skilled nursing, assistance with ADLs, assistance with cooking and light housekeeping, and medication monitoring. Patients and their caregivers are urged to investigate options with a social worker or case manager (www.eldercare.gov
Stefan does well with home health services for about 2 years but then has a fall resulting in a hip fracture. He requires emergency surgery and becomes wheelchair bound. Rene asks to talk to the social worker again because she is unable to care for both Stefan and her mother at home. After lengthy discussion with the social worker, Rene decides that her father needs a skilled nursing facility and her mother needs to move to an assisted living facility.