At the conclusion of this activity, participants will be able to:
- Discuss the importance of early diagnosis in Alzheimer’s disease and other dementias.
- Understand the benefit of cognitive testing as a screening tool.
- Discuss the importance of proactive advance care planning for patients with Alzheimer’s disease.
Describe how to integrate caregivers into the care of patients with dementia.
Alzheimer’s disease and other dementias currently affect more than 5 million people in the United States, and projections show that more than 13 million people will be impacted by the year 2050.1 For many of these patients and their caregivers, primary care is the first, and sometimes only, resource available,2 making the primary care physician (PCP) a vital source of guidance and information when an individual begins to experience cognitive, functional or behavioral changes.
Barriers To Diagnosis
Despite the growing numbers, dementia remains severely underdetected. More than 50 percent of people with dementia, mostly in the mild range but some with moderate dementia, have never received a diagnosis of dementia from a physician.3 Therefore, when a diagnosis of Alzheimer’s disease is made, symptoms have likely been present for two to three years, on average.4
Many reasons have been identified as barriers to diagnosis in the primary care setting. These include but are not limited to fear of stigmatizing the patient, lack of training, diagnostic uncertainty, shortage of specialized diagnostic assessment tools, patient denial of issues and the reluctance of healthcare providers to make a diagnosis when no effective disease-modifying options are available.5 Although many PCPs identified concerns about the emotional impact of the diagnosis on the patient and suicide risk, there is little evidence to support a significant overall risk of suicide in dementia.6
In truth, primary care providers are ideally suited to detect and manage dementia. Given the regular and consistent contact with patients, primary care providers are in the best position to notice changes in functioning and cognition over time. The relationship and trust built between PCPs and their patients can also help facilitate assessment and care management, particularly when additional diagnostic assessments may be with specialists the patient has not seen before or with whom the patient has not built a relationship.7
Importance Of Early Diagnosis
Physicians, caregivers and patients alike may question the necessity of an early diagnosis in dementia when treatment options are limited, and the progression of the disease cannot be stopped.5 Physicians, in particular, may weigh the potential risks and benefits of an early diagnosis, and the potentially negative consequences of a dementia diagnosis.8 However, the range of benefits that an early diagnosis can provide to patients is believed to offset potential negative consequences. These benefits include enabling a thorough review of medications, with risk/benefit analysis, access to early intervention and education that may prevent institutionalization, ruling out reversible causes of cognitive decline and the ability to consent to participate in research and clinical trials for disease-modifying drugs. Early diagnosis also allows patients and their families to make legal and financial plans.9 The ultimate goal of early detection is to improve the quality of life of patients during their remaining years, while reducing the caregiver and family burden as much as possible.
Elimination of reversible causes of cognitive decline. Early detection in the primary care setting can prompt an evaluation for reversible causes of cognitive loss before a referral to a specialist is made. Reviewing the medication list for potential culprits of cognitive disturbance can be done as a first step. Assessing for other reversible conditions, such as depression, sleep apnea, normal pressure hydrocephalus and others, is also crucial in the early stages, when interventions can be implemented with greater chances of success.
Obstructive sleep apnea is one disorder in particular where adequate treatment can have profound results. Sleep apnea is associated not only with cognitive decline but also with structural changes in the brain, including atrophy of the hippocampi, microbleeds and white matter damage.10 Sleep apnea has a tendency to present differently in the older adult who may not have the obvious risk factors,11 but screening is crucial, as just one year of adequate treatment has been found to lead to improvements in cognition and white matter integrity in the brain.12 This highlights the importance of ruling out potentially reversible causes of cognition.
Improved treatment and medical decisions. Early detection of dementia by primary care physicians can also be critical in effectively treating other comorbidities commonly found in the elderly. Physicians may be confused by uncontrolled hypertension, diabetes, etc., when poor medication compliance due to cognitive loss could be to blame. It may also explain sporadic or nonexistent follow-up.
Awareness of the presence of a dementia and neurodegenerative process may also help inform treatment decisions. For example, dementia is the leading risk factor for delirium, which alters the course of cognitive decline, resulting in more rapid progression and worse long-term outcomes.13 There are many risk factors for delirium that are potentially avoidable, such as the use of specific medications, severe pain and surgery.14
Knowledge of a dementia diagnosis would allow more discussion about whether a patient should proceed with a surgical procedure, given the increased likelihood of postoperative delirium and potentially permanent cognitive and functional declines.15
Proactive advance care planning. Early detection also allows for proactive planning to begin at a milder level of impairment, before a crisis disrupts the patient’s life and requires urgent intervention. Furthermore, confirmation of a diagnosis of dementia in the milder stages allows the patient to be involved in his or her care and future planning, including decision making regarding advance directives, living placements and estate management.16
The position of the American Geriatric Society is that advance care planning is a critical tool for helping individuals articulate and document their preferences to ensure that the care they receive matches their wishes, particularly near the end of life. Advance care planning improves care and quality of life, while increasing satisfaction with the healthcare system and reducing stress, anxiety and depression for older adults, family caregivers and other relatives.17 Attempting to manage legal affairs once a person has reached a stage of cognitive impairment where he or she is no longer able to make decisions can be costly, time-consuming and stressful. Earlier identification may also assist families in preventing harm that can come to vulnerable persons, such as mismanaging or scamming of financial assets, falling, getting lost or having an accident while driving.
Caregiver education. From a familial perspective, early detection can offer a clinical explanation regarding the changes family members are observing in their loved one. This can be especially valuable when personality changes (apathy, withdrawal, irritability or disinhibition) are the earliest symptoms, and may be seen as being within the patient’s control. Caregivers may experience the disclosure of the dementia diagnosis as a confirmation of suspicions18 or even with relief.19 Interventions for caregivers, including psychoeducation, supportive counseling, support groups and respite care, can have a significant impact in the earlier stages of the disease.20
Importance Of Cognitive Testing
Neuropsychological assessment is frequently used in the diagnosis of dementia. The neuropsychological assessment integrates information from clinical interviews, medical history, behavioral observations and performance on standardized and validated cognitive tests. Individual scores are compared to normative reference groups, taking into account personal characteristics, such as age, level of education and estimated premorbid abilities.21
Inclusion of a neuropsychological assessment in the diagnostic workup may ease some of the concerns expressed by physicians, and improve diagnostic accuracy, determine level of severity and inform recommendations and interventions.22 Neuropsychology can also play a role in tracking disease progression with the use of serial cognitive assessments.
Improve diagnostic accuracy and define level of impairment. An abundance of evidence shows the neuropsychological evaluation improves diagnostic accuracy in patients with dementia over and above routine clinical evaluation alone.23 The evaluation plays a crucial role in the differential diagnosis of cognitive complaints. Neuropsychological assessment has been shown to be highly effective at distinguishing between cognitively normal and cognitively impaired older adults. Importantly, the results of a neuropsychological evaluation can help distinguish between mild neurocognitive disorder (formerly mild cognitive impairment, MCI) and dementia.24
Mild neurocognitive disorder is a pre-clinical stage; the presence of this condition has relatively high predictive value for conversion to dementia, specifically Alzheimer’s disease. The exact predictive value and rate of conversion are highly dependent on the cognitive profile elucidated by neuropsychological testing.25 Individuals who display severe impairments in memory consolidation (amnestic) are at higher risk of conversion to dementia in the future.26 The ability to identify patients at this stage helps determine who is at greatest risk for developing dementia, and can inform which patients need closer monitoring and resources. In addition, studies have shown that a portion of patients diagnosed with mild neurocognitive disorder actually improve over time.27 This pre-clinical period may also represent a time when interventions to change lifestyle factors and target risk factors, namely, cerebrovascular risk factors, are most effective.
Determine specific etiology. Neuropsychological and cognitive testing also helps inform specific etiology among the dementia types. Although Alzheimer’s disease (AD) is the leading cause of dementia in the elderly, it has been known for some time that dementia can arise from a wide variety of etiologically and neuropathologically distinct disorders, that give rise to different patterns of cognitive strengths and weaknesses. Distinct patterns of cognitive deficits occur in AD and other neurodegenerative disorders, such as Parkinson’s disease, dementia with Lewy bodies (DLB), frontotemporal dementia (FTD) and vascular dementia.23
Although a definitive etiology cannot truly be determined until post-mortem, defining the disease and clinical features is important for several reasons. One of the clearest reasons is that different dementias have different courses and prognoses. DLB, for example, has been shown to have a less favorable prognosis than AD and other dementias. There is accelerated cognitive decline, shorter lifespan, increased institutionalization and more significant caregiver burden.28 In addition, these patients tend to have more prominent neuropsychiatric symptoms, but are at higher risk of serious adverse reactions to antipsychotic drugs, including potentially life-threatening neuroleptic malignant syndrome.29 Similarly, the course of FTD may be punctuated by severe changes in behavior and/or language, and not the traditional decline in memory associated with AD.30 Therefore, differential diagnosis can be crucial in determining appropriate treatment methods, and providing accurate education to patients and their families about what to expect as the disease progresses.
Importance Of Integrating Caregivers In Dementia Care
Evidence-based interventions for neurodegenerative diseases do exist, and have been found to alleviate the burden of disease. Unfortunately, as described by Lathren, Sloane, Hoyle, Zimmerman and Kaufer,31 many physicians report poor knowledge of available resources, unease with dementia counseling and family education and overall low referral rates to social services. Because of this, community resources are often underutilized.
Involving caregivers in intervention is crucial, because they provide the largest proportion of care for people with dementia. According to the Alzheimer’s Association, “In 2018, 16.3 million family members and friends provided 18.5 billion hours of unpaid care to people with Alzheimer’s and other dementias, at an economic value of nearly $234 billion.”32
Significance of caregiver burden in dementia. Caregiver stress and burden are a nationwide concern. The task of family caregiving for a person living with dementia, although rewarding, is not easy. Caregivers face many obstacles as they balance caregiving with other demands, including child-rearing, careers and relationships. Caregivers are at increased risk for the burdens of care, stress, depression and various other health complications.33 Numerous studies have shown that caregivers of people with dementia experience increased stress when compared to caregivers of individuals without dementia.34 Caregivers of individuals with dementia spend significantly more time per week providing care, and report greater impacts on employment, mental and physical health, leisure time and family life. In some cases, people living with dementia have drastic changes in mood and behavior, exhibiting symptoms of aggression, paranoia, wandering or apathy35—all of which have to be navigated, day after day, by their caregivers.
In 2018, the New Jersey State Legislature signed a bill establishing the New Jersey Caregiver Task Force to evaluate and provide recommendations for caregiver support services, recognizing the 1.75 million New Jerseyans who are providing unpaid care to the elderly.36 The state senate acknowledged that many of these caregivers are asked to provide complex tasks without skill training or support, such as administering multiple high-risk medications and operating medical equipment. The legislation also addressed concerns that caregivers, in comparison to non-caregivers, experience more physical health and mental health problems, such as depression, compromised immune response and higher rates of hospitalization. The healthcare system does not have the resources to provide this level of care should family caregiving no longer be available.
What caregivers want from their primary care physicians. Cohen, Pringle and LeDuc reviewed studies examining how caregivers for patients with dementia perceive their interactions with family physicians and what they hope to get from these providers.37 Most often repeated was that caregivers wanted recognition for the importance of their caregiver role and the challenges they faced. Families of affected individuals wanted a diagnosis of dementia communicated to them directly, and did not want the physician to step around the issue. Family members often did not feel they had received adequate information from their family physician. Caregivers expressed they wanted assistance with behavioral problems, referrals to agencies and regularly scheduled visits with the primary physician.
Providing support and resources. Primary care providers can support family caregivers in several ways. Acknowledging caregivers as the “hidden patients” in need of direct or indirect intervention can create a supportive environment in the treatment room.38 Understanding and acknowledging the challenges of caregiving can also create such an environment. Some clinicians opt to conceptualize the dyad (patient and caregiver) as one treatment unit, understanding that the wellness of the patient is dependent on the wellness of the caregiver. They may ask how the caregivers are engaging in selfcare, and encourage them to routinely follow up with their own medical appointments. Some clinicians adhere to the principles of the patient-centered medical home and conceptualize the caregiver as part of the treatment team39, tasked with carrying out complex aftercare plans, sometimes in the face of adversity. In these cases, clinicians provide the caregiver with education about the disease process and give clear instruction on how best to manage symptoms at home.
If you do not already do so, reframing how you view the patient and caregiver can affect the way you communicate, validate and address caregiving concerns. If you wish to formalize this practice as a routine part of usual care, several validated tools exist, such as the Zarit Caregiver Burden Scale, which can screen and track caregiver stress.
Helping families navigate the health and social-care systems is an important aspect of holistic care. However, due to time constraints and staffing, it can be challenging to provide a personalized care plan complete with community resources. Physicians should be aware that while these services were not traditionally reimbursed by Medicare, they are now covered since the implementation of CPT code 99483 in January 2019. This code covers “assessment of and care planning for a patient with cognitive impairment, requiring an independent historian, in the office or other outpatient, home or domiciliary or rest home.”40 In addition, having general knowledge of a few key agencies and offering educational material can point families in the direction of those who might be able to help them.
For example, there are 21 counties in the state of New Jersey. Each county has an Area Agency on Aging/Aging and Disability Resource Connection (AAA/ADRC). This agency functions as a “no wrong door” (based on Centers for Medicare & Medicaid Services guidelines) single point of entry for adults seeking supportive services and community resources. All caregivers should be made aware of AAA/ADRC, and encouraged to call to determine whether their loved one is eligible for state or county programs, such as day programs, home health, senior centers and transportation. Even if the patient is in the mild stage of the disease and does not require formal services at this time, families should familiarize themselves with what is available.
Additionally, the Alzheimer’s Association has chapters in the northern and southern parts of the state. The Alzheimer’s Association provides extensive educational material, family caregiver conferences, support groups and a 24-hour helpline. If feasible, families and patients can be referred to a specialized memory care clinic for evaluation, education and links to community services, while still maintaining their primary care relationship.
The state of Connecticut offers five Area Agencies on Aging, which are private nonprofit planning agencies that fund social services, nutritional services, family caregivers support services and adult day care aides for patients with Alzheimer’s disease and related dementia. Additionally, the Alzheimer’s Association has four chapters throughout Connecticut.
- Alzheimer’s Association Resources for Healthcare Professionals: This website provides resources and information to enhance Alzheimer’s and dementia patient care and professional development. A PocketCard app is also available for download. https://alz.org/professionals/ healthcare-professionals
- Information and Resources on CPT Code 99843: Cognitive assessment and care plan services. https://alz.org/professionals/healthcareprofessionals/care-planning
- Area Agency on Aging/Aging and Disability Resource Connection 1-800-235-5353 • Alzheimer’s Association 24-hour helpline 1-800-272-3900
- Rowan SOM, New Jersey Institute for Successful Aging, Memory Assessment Program (located in southern New Jersey) 856-566-6843
- COPSA, Memory Care Clinic (located in central New Jersey) 1-800-969-5300
In Pennsylvania, there are 52 Area Agencies on Aging that cover all 67 counties. Adult day centers provide social, recreational and health services for older Pennsylvanians, and are a resource for families and other caregivers who work and are unable to provide assistance during work hours. The state has more than 500 senior community centers that offer meals, recreation, health and wellness programs. The Pennsylvania Link to Aging and Disability Resources connects consumers to the full range of services available. Additionally, the Alzheimer’s Association offers 10 regional offices throughout the state of Pennsylvania.
All of these agencies, organizations and resources are available to help patients and caregivers find their way through the often confusing maze of the healthcare system after a diagnosis of Alzheimer’s or related dementia. But none can be of any help if those in need do not know what is available to them. That is why the primary care physician is such a vital source of guidance and information when an individual begins to experience cognitive, functional or behavioral changes.
Primary care physicians are playing an increasingly integral role in the diagnosis and management of Alzheimer’s disease and other dementias. Although there are barriers to the diagnosis and care of dementia in the primary care setting, primary physicians are crucial in early detection of cognitive decline. Equipped with appropriate resources and information, primary care physicians can direct patients and their caregivers to receive the support they need.
Nicole Sestito, PhD, ABPP/CNs, is a clinical neuropsychologist and Assistant Professor at Rowan University School of Osteopathic Medicine (SOM), Department of Geriatrics and Gerontology and the New Jersey Institute of Successful Aging (NJISA).
Lisa Bodenheimer, LCSW, MSW, is a clinical social worker and instructor at Rowan University SOM, Department of Geriatrics and Gerontology and NJISA.
Christian P. White, DO, is a geriatric psychiatrist and Assistant Professor at Rowan University SOM, Department of Geriatrics and Gerontology and NJISA.