Dementia is a syndrome resulting from acquired brain disease and characterized by progressive deterioration in memory and other cognitive domains (e.g., language, judgment, abstract thinking, and executive functioning). Although the cognitive profiles of individuals diagnosed with dementia vary somewhat by etiology, the degree of deterioration represents a decline from previous levels of functioning and is sufficient to interfere with social and occupational functioning.
The cognitive decline associated with dementia affects an individual's ability to comprehend and produce linguistic information. Additionally, behavioral problems that develop as a result of the neuropathology (e.g., paranoia, hallucinations, and repetitiousness) may interfere with communication.
The cognitive and behavioral symptoms of dementia are differentiated from those of
- delirium, an acute state of confusion associated with temporary, but reversible, cognitive impairments (Mahendra & Hopper, 2013);
- age-related memory decline;
- other conditions that have inconsistent symptoms or are temporary and/or treatable (Bourgeois & Hickey, 2009), including
- infections (e.g., urinary tract infection [UTI], meningitis, syphilis),
- toxicity (e.g., drug-induced dementia, toxic metal exposure),
- pseudodementia due to psychiatric disorders (e.g., depression, generalized anxiety disorder, schizophrenia, mania, conversion disorders).
In contrast to these conditions, the symptoms associated with dementia continue to progress in severity until death (Bourgeois & Hickey, 2009). Neurodegenerative diseases that result in dementia include
- Alzheimer's disease,
- Lewy body disease,
- vascular pathology (e.g., multi-infarct dementia),
- frontotemporal lobar degeneration (e.g., Pick's disease and primary progressive aphasia),
- Huntington's disease,
- Parkinson's disease.
Other conditions that result in dementia due to progressive changes in brain function include
- Wernicke-Korsakoff syndrome secondary to chronic alcohol abuse,
- traumatic brain injury (TBI),
- chronic traumatic encephalopathy due to repeated trauma (e.g., dementia pugilistica),
- chemotherapy (Kean & Locke, 2008),
- multiple sclerosis,
- human immunodeficiency virus (HIV).
See detailed information about common dementias.
Primary dementias are those—like Alzheimer's disease (AD), multi-infarct dementia, and dementia with Lewy bodies—in which the dementia itself is the major sign of an organic brain disease not directly related to any other organic illness. Secondary dementias are those caused by, or closely related to, some other recognizable disease, such as HIV, head injury, multiple sclerosis, or chronic alcohol abuse.
There is evidence that neuropathological changes occur well in advance of clinical manifestations of Alzheimer's dementia (Bennett et al., 2006), and subtle cognitive deficits occur up to 9 years prior to the diagnosis (Amieva et al., 2005). These and similar findings have led to the concept of mild cognitive impairment (MCI), described as a transitional stage between normal aging (i.e., age-associated memory impairment) and dementia (Bourgeois & Hickey, 2009; Qualls, 2005). Individuals diagnosed with MCI are at greater risk of developing dementia; early identification of MCI might enable the use of cognitive interventions to slow the progression of decline (Qualls, 2005).
MCI is consistent with the diagnostic category, Mild Neurocognitive Disorder, defined in the Diagnostic and Statistical Manual of Mental Disorders-5th edition (DSM-5; American Psychiatric Association, 2013). The clinical criteria for diagnosing MCI are
- subjective complaints or concerns about cognitive changes corroborated by an informant,
- impairment in one or more cognitive domains relative to age and educational level (preferably documented by standardized testing),
- essentially normal activities of daily living (although some may require greater effort or use of compensatory strategies),
- absence of dementia—changes are mild with no significant social or occupational impairment.
(Albert et al., 2011; American Psychiatric Association [AMA], 2013; Bourgeois & Hickey, 2009; Key-DeLyria, 2013; Mahendra & Hopper, 2013)
Dementia is typically associated with the elderly population. However, dementia can affect younger individuals. Early-onset dementia (EOD) refers to dementias that occur before the age of 65.
Differential diagnosis of EOD is complicated by the fact that symptoms may be more variable in younger patients than in the elderly, due to different etiologies (McMurtray, Clark, Christine, & Mendez., 2006; Fadil et al., 2009) and a lack of awareness about the condition, even among health care professionals (Jefferies & Agrawal, 2009). In addition, some causes of EOD are curable, which makes the need for timely and accurate diagnosis even more crucial (Fadil et al., 2009).
The needs of younger individuals with dementia are different from those of individuals with late-onset dementia. EOD often affects individuals who are working and have dependent families and significant financial responsibilities, and services and supports for these individuals are complex and require input from a multidisciplinary team (Jefferies & Agrawal, 2009). Early diagnosis allows for early treatment, access to appropriate supports, and long-term preparation and planning for the family.
Approximately one third of Americans between the ages of 65 and 74 and nearly half of those over the age of 75 have hearing loss (National Institute on Deafness and Other Communication Disorders [NIDCD], 2010). Many older adults will have both hearing impairment and cognitive loss, and, together, these losses will affect communication, social participation, and quality of life (Pichora-Fuller, Dupuis, Reed, & Lemke, 2013).
Lin et al. (2013) found that individuals with baseline hearing loss had greater rates of cognitive decline over time than individuals with normal hearing. Further investigation is needed to clarify this relationship and to determine whether or not hearing loss is a risk factor for dementia. One hypothesis is that when a hearing loss is present, greater cognitive resources are dedicated to auditory processing, leaving fewer resources for other cognitive processes, like working memory (Peelle, Troiani, Grossman, & Wingfield, 2011). Recent research suggests the possibility of a shared etiological pathway responsible for both hearing loss and dementia (Gallacher et al., 2012)
It is important for clinicians to differentiate between hearing loss and cognitive impairment and to identify when one or both of these conditions are present.
Incidence and Prevalence
Estimates of the prevalence of dementia vary considerably by the age group on which the estimates are based. Prevalence among those age 85 and above, for example, is likely to be considerably higher than estimates based on those age 65 and above. In addition, prevalence data are often categorized more broadly or more narrowly than "dementia." The Centers for Disease Control and Prevention, for example, cites prevalence data for specific causes of dementia, typically Alzheimer's disease, while the National Institutes of Health (NIH) subsumes dementia under the category of Serious Mental Illness. Data on the prevalence of Alzheimer's indicate increasing prevalence. Starting at age 65, the risk of developing the disease doubles every 5 years. By age 85 years and older, between 25% and 50% of people will exhibit signs of Alzheimer's disease. Up to 5.3 million Americans currently have Alzheimer's disease (Hebert, Scherr, Bienias, Bennett, & Evans, 2003). By 2050, the number is expected to more than double due to the aging of the population. Alzheimer's disease is the sixth leading cause of death in the United States and is the fifth leading cause among persons age 65 and older (Heron et al., 2009).
A recent meta-analysis (Prince et al., 2013) found global prevalence of dementia from all causes to be between 5% and 7% of adults age 60+. Two recent studies of dementia prevalence have shown some indication that prevalence may be declining. In one (Matthews et al., 2013), prevalence surveys of adults age 65+ were conducted almost 2 decades apart (1989 and 2008). After controlling for differences in the patient populations, the researchers found that the 2008 cohort had significantly lower prevalence of dementia. The second study (Christensen et al., 2013) took a slightly different approach. Those researchers assessed two cohorts of patients. One cohort was born in 1905 and was assessed in 1998 at age 93. The second cohort was born 10 years later, in 1915, and was assessed in 2010 at age 95. The 1915 cohort was found to have significantly lower prevalence of dementia. Both research teams concluded that the likely explanation was improved primary prevention of causes such as stroke.
Neither of the research teams found changes in the prevalence of Alzheimer's specifically, and it should also be noted that one study was conducted in the United Kingdom and the other in Denmark, so it cannot necessarily be concluded that primary prevention efforts in the United States have been similarly successful.
A limited number of studies have examined the prevalence of dementia among racial and ethnic groups. Differences in sampling methods and definitions of dementia, as well as difficulties controlling for variables such as level of education and bias in assessment batteries, limit the generalizability of results. However, results from individual studies suggest that the incidence and prevalence of dementia varies across racial and ethnic groups (Manly & Mayeux, 2004).
The Aging, Demographics, and Memory Study (ADAMS) used a nationally representative Health and Retirement Survey to estimate the prevalence of Alzheimer's disease (AD) and other dementias in the United States. Results were analyzed to determine the overall prevalence of dementia, as well as the relationship between dementia and variables such as education, gender, race (African American or Caucasian), and Apolipoprotein E (APOE) genotype. Controlling for education, gender, and APOE genotype, researchers found that African Americans were at a greater risk for dementia than Caucasians, although this difference was not statistically significant (Plassman et al., 2007).
Signs and Symptoms
The symptoms of dementia can be different depending on the diagnosis and the stage of the disease. Although late-stage signs and symptoms may be similar across etiologies, characteristic early symptoms can vary considerably. For example, individuals with frontotemporal dementia and Huntington's disease experience behavior changes and depression; those with primary progressive aphasia experience gradual loss of language function but relatively well-preserved memory; and individuals with Binswanger's disease (a type of vascular dementia) experience stroke-related neurological symptoms, including dysarthria and dysphagia (Hegde, 2006). Cultural values, views of the aging process, and beliefs relative to cognitive decline may influence a family's decisions about therapeutic services and may at times inhibit or delay seeking help until symptoms are beyond early or mild stages (Hart, Gallagher-Thompson, Davies, DiMinno, & Lessin, 1996).
In general, individuals with dementia experience a gradual loss of memory and other cognitive functions. As the disease progresses, early symptoms intensify, eventually affecting the ability to communicate effectively and function independently. Examples of common signs and symptoms of dementia are listed below.
Common attention deficits include
- being easily distracted,
- having difficulty attending, unless input is restricted/simplified,
- experiencing decreased information-processing speed-thinking/processing takes longer than usual.
Learning and Memory
Common learning and memory deficits include
- episodic memory deficits, including difficulty remembering specific autobiographical events, situations, and experiences;
- short-term/working memory deficits—rapid forgetting of information recently seen or heard;
- difficulty acquiring and remembering new information (e.g., appointments or events, new routines).
Reasoning and Executive Functioning
Common reasoning and executive functioning deficits include
- difficulty setting goals and planning, including reliance on others to plan activities and/or make decisions;
- poor judgment and impaired reasoning and problem-solving abilities, such as making decisions without regard to safety;
- difficulty multi-tasking and handling complex tasks—need to focus on one task at a time;
- difficulty responding to feedback, self-monitoring, and correcting one's own errors;
- lack of inhibition;
- lack of mental flexibility.
Common perceptual deficits include
- difficulty completing previously familiar activities or navigating in familiar environments;
- inability to recognize familiar people, common objects, sounds, etc.;
- inability to find objects in direct view, independent of visual acuity.
Common language deficits include
- less concise (empty) discourse with fewer ideas;
- economy of utterances and stereotypy of speech;
- repetitious/perseverative language (e.g., asking the same question repeatedly);
- word-finding difficulties, including long latencies, paraphasias, and word substitutions;
- difficulty recalling names of family and friends;
- tangential language;
- grammatical errors, including omission or incorrect use of articles, prepositions, auxiliary verbs, etc.;
- use of jargon and loss of meaningful speech;
- difficulty following and maintaining conversation;
- in bilingual patients, errors in selecting and maintaining appropriate language during conversation (Friedland & Miller, 1999);
- regression to primary language in bilingual patients (Mendez, Perryman, Pontón, Cummings, 1990);
- language comprehension deficits;
- difficulty following multi-step commands;
- impaired ability to compose meaningful written language;
- reading comprehension difficulties.
Common social cognition and behavior deficits include
- inappropriate behavior outside of socially acceptable range,
- inability to read facial expressions and other social cues,
- loss of empathy,
- mood fluctuations, including agitation and crying,
- negative reaction to questioning,
- compulsive or obsessive behaviors,
- erratic or strange behaviors,
- loss of initiative/motivation,
- paranoia and delusions of persecution.
Cognition and language are intrinsically and reciprocally related in both development and function. An impairment of language may disrupt one or more cognitive processes (e.g., attention, perception, memory, and executive functioning) and, similarly, an impairment of one or more cognitive processes may disrupt language and affect the individual's ability to communicate effectively.
Individuals who forget what they have recently heard, seen, or thought may have difficulty following a conversation; they often lose track of the topic, miss the point, and/or repeat themselves. With more significant memory decline, individuals may become disoriented to time and place and have difficulty remembering recent events. Verbal output may be reduced and less substantive, and they may become less efficient in expressing information. Attention, executive functioning, and processing deficits can affect the ability to actively engage in conversation, keep track of topic changes, and process information accurately and in a timely manner.
Feeding And Swallowing
In addition to the effects of neuromuscular and/or motor planning deficits associated with some conditions, the cognitive decline associated with dementia can impact feeding and swallowing. Individuals with dementia may forget to eat meals, initiate eating less often, or take in less food and drink than they normally would during meals, due to distractions in the environment. Reduced intake may eventually compromise nutrition. In addition, individuals with dementia may not attend to food in the mouth or may not remember to chew and initiate a swallow, placing them at risk for choking and aspiration pneumonia (Bourgeois & Hickey, 2009).
Most dementias are the result of neuropathology resulting from diffuse degeneration in cortical and/or subcortical structures and neural pathways, and/or chemical changes that affect neural functioning. Examples of structural changes include neurofibrillary tangles and neuritic plaques, commonly associated with Alzheimer's disease. Neural pathways (connections between neurons) responsible for memory and new learning are also lost. Examples of chemical changes include cholinergic deficits within the subcortical structures, as in Alzheimer's disease, or chemical imbalances associated with metabolic disorders.
Alzheimer's disease is the most common cause of dementia, accounting for approximately 70% of all cases (Plassman et al., 2007), and the risk of acquiring Alzheimer's is higher if an individual has a first-order relative with the disease (Lovestone, 1999). Vascular dementia is widely considered the second most common cause, accounting for approximately 17% (Plassman et al., 2007). The remaining cases are accounted for by dementia with Lewy bodies, Parkinson's disease, frontotemporal lobar dementia, and mixed dementia types (e.g., AD with Lewy body pathology and AD with vascular pathology; Mahendra & Hopper, 2013; Plassman et al., 2007).
The concept of cognitive reserve was introduced to account for the observation that there does not appear to be a direct relationship between the severity of brain damage or pathology and the degree of disruption in performance (Stern, 2003, 2009). It is applicable to most situations in which disruption to brain functioning occurs, including traumatic brain injury and dementia.
Models of cognitive reserve postulate that increased brain reserve capacity (e.g., brain size or synapse count; Satz, 1993) or more efficient cognitive processing (Stern, 2002) allows some individuals to cope with brain insult better than others. Individual differences in cognitive reserve can stem from genetic differences or differences in life experiences, including educational and occupational experiences and involvement in leisure activities (Stern, 2009).
In addition to lifestyle factors, lifelong bilingualism has been proposed as a factor contributing to cognitive reserve. In studies comparing bilingual and monolingual individuals, bilinguals demonstrated onset of dementia symptoms approximately 4 to 5 years later than monolinguals (Bialystok, Craik, & Freedman, 2007; Craik, Bialystok, & Freedman, 2010). The cognitive demands of bilingualism may contribute to an increased cognitive reserve in much the same way as other stimulating activities (Craik et al., 2010). These results cannot be generalized to individuals who are not fully bilingual (Bialystok et al., 2007).
Roles and Responsibilities
Speech-language pathologists (SLPs) play a central role in the screening, assessment, diagnosis, and treatment of persons with dementia. The professional roles and activities in speech-language pathology include clinical/educational services (diagnosis, assessment, planning, and treatment), prevention and advocacy, and education, administration, and research. See ASHA's Scope of Practice in Speech-Language Pathology (ASHA, 2007).
Appropriate roles for SLPs include
- identifying risk factors for dementia, taking into account variability among individuals from different racial and ethnic backgrounds and culturally and linguistically diverse populations;
- providing prevention information to individuals and groups known to be at risk for dementia, as well as to individuals working with those at risk;
- educating other professionals, third-party payers, and legislators on the needs of persons with dementia and the role of SLPs in diagnosing and managing cognitive communication and swallowing disorders associated with dementia;
- educating caregivers about possible communication difficulties and providing strategies to facilitate effective communication;
- screening individuals who present with language and communication difficulties, including hearing screening;
- determining the need for further assessment and/or referral for other services;
- conducting a culturally and linguistically appropriate comprehensive assessment across the SLP scope of practice, including assessment of cognitive-communication functioning and swallowing;
- diagnosing cognitive-communication disorders of dementia across the course of the underlying disease complex;
- assessing, diagnosing, and treating swallowing disorders associated with dementia;
- referring to an audiologist to rule out hearing loss and balance problems;
- referring to other professionals to rule out other conditions, determine etiology, and facilitate access to comprehensive services;
- making decisions about the management of cognitive-communication deficits associated with dementia;
- developing treatment plans for maintaining cognitive-communication and functional abilities at the highest level throughout the underlying disease course;
- treating the cognitive aspects of communication, including attention, memory, sequencing, problem solving, and executive functioning;
- selecting culturally and linguistically appropriate techniques for direct intervention;
- gathering and reporting treatment outcomes;
- monitoring cognitive-communicative status to ensure appropriate intervention and support;
- providing indirect intervention through the individual's caregivers and environmental modification;
- providing counseling to persons with dementia and their families regarding communication-related issues and providing information about the nature of dementia and its course;
- consulting and collaborating with other professionals, family members, caregivers, and others to facilitate program development and to provide supervision, evaluation, and/or expert testimony, as appropriate;
- remaining informed of research in the area of dementia and helping advance the knowledge base related to the nature and treatment of dementia;
- advocating for individuals with dementia and their families at the local, state, and national levels;
- serving as an integral member of an interdisciplinary team working with individuals with dementia and their families/caregivers;
- serving as a case manager, coordinator, or team leader to ensure appropriate and timely delivery of a comprehensive management plan;
- providing quality control and risk management.
As indicated in the Code of Ethics (ASHA, 2010), SLPs who serve this population should be specifically educated and appropriately trained to do so. Given the relationship between cognition and communication, practitioners who serve individuals with dementia require knowledge and skills in both areas, including specific knowledge of cognitive-communication disorders associated with dementia, to fulfill the aforementioned roles.
Most common dementia-associated diseases are progressive in nature, and SLPs have an ethical responsibility to provide appropriate services that will benefit the individual and maximize cognitive-communication functioning at all stages of the disease process.
SLPs collaborate with many other disciplines in caring for individuals with dementia. Referral and collaboration between members of the team, particularly during the assessment process and treatment planning, are important to help ensure quality service for individuals affected by communication and cognitive disorders. Coordinating assessment can prevent overlap in test selection. Ultimately, the focus of collaborative efforts must be on the clinical utility of information and how professionals with complementary knowledge and skills can affect functional outcomes for patients in a beneficial manner.
See the Assessment section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.
The diagnosis of dementia is made by a medical team. The role of the speech-language pathologist (SLP) is to assess cognitive-communication deficits related to dementia (e.g., memory problems; disorientation to time, place, and person; difficulty with language comprehension and expression) and to identify cultural, environmental, and linguistic factors that impede functioning.
The SLP determines the most appropriate assessment protocol based on the stage of dementia and the individual's communication needs. In addition, when selecting cognitive-communication screening instruments and subsequent tests for comprehensive evaluation, the clinician considers the cultural and linguistic background of the client, using tests that have normative samples of culturally and ethnically diverse groups when available. Standard scores should not be reported, if the normative sample is not representative of the individual being assessed.
Screening for cognitive impairment is conducted by an SLP or other member of the interdisciplinary care team for individuals with any condition that increases their risk for cognitive-communicative problems, including hearing loss. Many standardized instruments with demonstrated reliability for screening of dementia are available. These instruments typically assess orientation to time, place, and person. Other tests (e.g., story recall/story retelling) assess episodic memory and can be useful for screening for early dementia (Bayles & Tomoeda, 1993; Rabin et al., 2009; Takayama, 2010; Wechsler, 1999).
Prior to screening for cognitive-communication disorders associated with dementia, it is important to consider the impact of sensory impairment, depression, and current medications on cognitive functioning. If screening reveals cognitive impairment, individuals are referred to an SLP for a comprehensive evaluation of communicative function. Referral for other examinations or services are made as needed.
Hearing loss is common among older adults, and many individuals have untreated hearing loss and do not wear hearing aids or make use of other hearing technologies. Audiometric hearing screening and otoscopic inspection for impacted cerumen are to be conducted prior to cognitive-communication screening.
Traditional behavioral tests of hearing (e.g., pure tone and speech audiometry) are generally successful in the early stages of dementia, although modifications such as simplifying directions, using pulse tones, slowing presentation of speech stimuli, providing reminders to respond, and responding with "yes" instead of raising a finger or pressing a button may be needed. During the later stages of dementia, more objective tests (e.g., otoacoustic emissions or auditory steady state response) may be necessary to obtain estimated thresholds (Burkhalter, Allen, Skaar, Crittenden, & Burgio, 2009), as may be modifications of assessment procedures for those patients who do not condition to standard tasks.
If the individual fails the hearing screening, a referral is made to an audiologist for a comprehensive assessment. If an individual has a diagnosed hearing loss and wears hearing aids, hearing aids are inspected to ensure that they are in working order and worn by the individual during cognitive-communication screening. The use of assistive listening technology should be employed when hearing aids are not being used.
If visual deficits are suspected, the individual is referred for vision testing prior to completing cognitive-communication screening. Prescription eye glasses, as needed, are to be worn during screening, and adequate lighting used in the test (and treatment) environment.
Depression is common in individuals with dementia and can adversely affect test performance. Cognitive changes associated with depression so resemble the cognitive changes associated with dementia that depressive symptoms are often referred to as "pseudodementia." If signs and symptoms of depression are present, the individual is referred to a neuropsychologist or clinical psychologist experienced with geriatric depression.
Prior to screening, the SLP considers the effects of prescription drugs on cognitive-communicative function. Polypharmacy, or the concurrent use of several medications, is common among older adults who have multiple medical conditions, and some medications may exacerbate cognitive problems. Questions about the effects of medication use on cognitive-communication functioning can be answered by a pharmacist knowledgeable in geriatric pharmacy.
Individuals suspected of having cognitive-communication problems are referred for a comprehensive assessment of language and communication. SLPs often conduct these assessments in collaboration with neuropsychologists. Assessment may include clinical observations in the home or long-term care setting.
Assessment is conducted to identify and describe
- underlying strengths and weaknesses related to cognition, language, and social/behavioral factors (see Signs and Symptoms) that affect communication performance;
- effects of cognitive-communication impairments on the individual's activities and participation in ideal settings, everyday contexts, and employment settings;
- contextual factors that serve as barriers to or facilitators of successful communication and participation for individuals with cognitive-communication impairment;
- the impact on quality of life for the individual and the impact on his or her family/caregivers.
Assessment may result in
- diagnosis of a cognitive-communication disorder;
- clinical description of the characteristics of a cognitive-communication disorder;
- statement of prognosis for improved outcomes;
- recommendations for intervention and support;
- identification of the effectiveness of intervention and supports;
- referral for other assessments or services.
A comprehensive assessment is sensitive to cultural and linguistic diversity and addresses the components within the World Health Organization (WHO) International Classification of Functioning, Disability and Health (ICF) framework (see ASHA's Scope of Practice in Speech-Language Pathology, ASHA, 2007; WHO, 2001), including body structures/functions, activities/participation, and contextual factors. Assessment should occur in the language(s) used by the person with dementia.
Assessment can be static (i.e., using procedures designed to describe current levels of functioning within relevant domains) and/or dynamic (i.e., an ongoing process using hypothesis-testing procedures to identify potentially successful intervention and support procedures). When dementia is caused by a progressive disease, periodic reevaluation (e.g., yearly) and adjustment of care plans become essential to meet changing needs.
Assessment typically includes
- relevant case history, including medical status, education, occupation, and socioeconomic, cultural, and linguistic background;
- review of auditory, visual, motor, cognitive, and emotional status;
- patient/client and family reports of goals and preferences, as well as domains and contexts of concern;
- standardized and nonstandardized methods selected with consideration for ecological validity:
- observation and description of the individual's processing of various types of information under ideal conditions and in the context of various activities and settings (e.g., ability to attend to, perceive, organize, and remember verbal and nonverbal information to reason and to solve problems);
- observation and description of the individual's executive or self-regulatory control over cognitive, language, and social skills functioning (e.g., ability to set goals, plan, initiate and inhibit, self-monitor and self-evaluate, solve problems, and think and act strategically);
- analysis of the cognitive and communication demands of relevant social, academic, and/or vocational tasks and identification of possible facilitative effects in modification of those tasks;
- identification of the communication and support competencies of relevant people in the environment and possible facilitative effects of modification of their support behaviors;
- identification of the individual's potential for effective compensatory behaviors and associated motivational barriers and facilitators;
- follow-up services to monitor cognitive-communication status and ensure appropriate intervention and support for individuals with identified cognitive-communication disorders.
Assessment of Swallowing
A comprehensive assessment includes a swallowing screening or, if indicated, a swallowing assessment. An estimated 45% of individuals with dementia residing in an institution have dysphagia (Easterling & Robbins, 2008), and dysphagia is more prevalent in patients with Alzheimer's disease than in normal elderly individuals (Horner, Alberts, Dawson, & Cook, 1994). This increased prevalence may be associated with a diminished sense of smell and cognitive changes associated with the progression of dementia (Easterling & Robbins, 2008).
Swallowing assessment with individuals with dementia involves evaluation of
- the oral mechanism;
- the patient's ability to comprehend and use compensatory strategies;
- the individual's oral preparatory, oral, pharyngeal, and esophageal phases;
- the individual's recognition of food and utensils;
- environmental impacts, including the appearance of the food, lighting, and distractions;
- food and liquid trials with a variety of temperatures, textures, tastes, postures, and strategies and consideration for the individual's food preferences;
- the potential impact of the individual's prescribed medications on swallowing function;
- the influence of cognitive factors on feeding and swallowing.
An instrumental evaluation may be performed to determine safety and identify effective treatment techniques or strategies, if the patient is able to respond appropriately and tolerate the procedure. The instrumental evaluation may provide additional information about the oral and pharyngeal bolus transit, airway protection, the impact of bolus texture and size, and appropriate pacing (Easterling & Robbins, 2008).
There are a number of assessment tools that produce a valid characterization of cognitive-communication strengths and weaknesses—including language comprehension and expression and integrity of working, declarative, and procedural memory systems—and that have been standardized on individuals with dementia. The severity level of dementia in the individual being tested is factored into test selection. Some tests are too difficult for the individual with severe dementia and do not yield useful information, because the individual fails most or all of the items.
Assessment in Long-Term Care Facilities
Passage of the Omnibus Budget Reconciliation Act in 1987 mandated evaluation of the physical and psychological status of residents in long-term care facilities at the time of admission and periodically thereafter. The required evaluation, known as the Minimum Data Set (MDS), includes questions about the ability of residents to hear, comprehend, and produce language. Although the law does not require that judgments about hearing and communicative function be made by SLPs, the inclusion of these questions on the MDS helped establish a role for SLPs with long-term care residents.
See the treatment section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.
Treatment for the cognitive-communication deficits associated with dementia addresses the specific needs of the individual, taking into consideration the stage of the illness. Most common dementia-associated diseases are progressive in nature, and speech-language pathologists (SLPs) have an ethical responsibility to provide appropriate services that will benefit the individual and maximize cognitive-communication functioning at all stages of the disease process. Interventions that enhance activity and participation through modification of contextual factors may be warranted even if the prognosis for improved body structure/function is limited.
SLPs consider the individual's age, education, premorbid information, social history, present social context, cultural and linguistic background, and vocational status (current or premorbid) in formulating realistic and functional treatment goals within the bounds of the cognitive-communication disorder and with consideration for the progressive nature of the disease. Goals are often set based on the individual's current level of functioning, which can be determined using standardized functional rating scales.
Decisions about goals and treatment options are made in collaboration with clients, families/caregivers, and other health professionals. Clinicians can work directly with the individual who has dementia or indirectly through environment modifications, caregiver training, or the development of therapeutic routines and activities.
Treatment also involves providing information and guidance to the individual, family/caregiver(s), and other significant persons about the nature of the disorder and the course of treatment. Treatment occurs in the language(s) used by the person with dementia either by a bilingual SLP or with the use of trained interpreters, when necessary. See bilingual service delivery.
Demographic shifts and immigration patterns have led to increased diversity among the elderly population and their caregivers in the United States. Cultural influences and familial expectations regarding roles may impact long-term care decisions, who makes these decisions, and the value of treatment and intervention (Hinton, Fox, & Levkoff, 1999; Low et al., 2009; Parker, Young, & Rogers, 2010; Whitlatch & Feinburg, 2003; Williams & Harvey, 2013; Winslow & Flaskerud, 2009). See cultural competence.
Although SLPs are autonomous professionals, successful intervention with individuals with cognitive-communication disorders often requires the collaborative involvement of other professionals. SLPs work collaboratively with neuropsychologists and other professional colleagues (e.g., audiologists), families, employers, and others who provide support to individuals with cognitive-communication disorders. SLPs (working within their scope of practice and at their individual level of competence) are uniquely qualified to treat communication disorders associated with cognitive impairments.
Consistent with the World Health Organization (WHO) framework, intervention is designed to
- capitalize on strengths and address weaknesses related to underlying structures and functions that affect communication,
- facilitate the individual's activities and participation by assisting the person to acquire new skills and strategies,
- modify contextual factors that serve as barriers and enhance facilitators of successful communication and participation, including development and use of appropriate accommodations.
Because of the progressive nature of most dementia-associated illnesses, clinicians must determine whether individuals with dementia have the potential to benefit from cognitive-communication interventions. Positive prognostic factors are identified that demonstrate the feasibility of the proposed intervention.
Depending on assessment results, intervention addresses
- processing of various types of information under ideal conditions and in the context of various activities and settings;
- executive or self-regulatory skills (e.g., setting goals, planning, initiating and inhibiting, self-monitoring and self-evaluating, problem solving, thinking and acting strategically);
- use of effective compensatory behaviors and communication techniques and strategies;
- audiology services as needed for identified hearing loss (e.g. hearing aids, hearing assistive technology);
- cognitive and communication demands of relevant social, academic, and/or vocational tasks to facilitate performance of those tasks;
- communication and support competencies of relevant people in the environment (e.g., families/caregivers).
Those who provide care to individuals with dementia, including both professionals and family members, are faced with a number of challenges that can ultimately affect their own health and wellbeing (Schulz & Beach, 1999; Shaw et al., 1997). The changes in communication functioning brought about by cognitive decline can significantly affect day-to-day communication, resulting in considerable frustration. Research focused on individuals with AD suggests that training caregivers about dementia and teaching them to use strategies to enhance communication effectiveness may contribute to increased caregiver understanding of communication breakdowns; more successful conversational exchanges; and improved quality of life for the individual with dementia (Zientz, Rackley, Chapman, Hopper, & Mahendra, 2007).
The goal of cognitive-communication treatment is to maximize the individual's quality of life and communication success, using whichever approach or combination of approaches meets the needs and values of that individual.
The following are brief descriptions of both general and specific treatments for persons with cognitive-communication disorders associated with dementia. Some treatment approaches are considered compensatory, and some are considered restorative in nature. Compensatory treatment approaches focus on teaching methods and skills to compensate for or overcome deficits that are not amenable to retraining. Restorative treatments involve direct therapy aimed at improving or restoring impaired function(s) through retraining. Where available, links to evidence and expert opinion regarding the intervention are provided. This list is not exhaustive nor does inclusion of any specific treatment approach imply endorsement by ASHA.
Assistive Technology (including hearing assistive technology)
Assistive technology (AT) is a generic term that includes assistive, adaptive, and rehabilitative devices and services for individuals with disabilities. An assistive technology device is any item, piece of equipment, or system—whether commercial, modified, or customized—that is used to increase, maintain, or improve the functional capabilities of a person with disabilities. Hearing Assistive Technology Systems (HATS) are available for individuals who currently use hearing technology, such as hearing aids and cochlear implants. HATS are also available for those with hearing loss that is untreated. Personal amplifiers and FM systems and other technology can enhance face-to-face communication. There are several commercially available and emerging assistive technologies that, with further interdisciplinary research and modifications, may have potential applications to dementia care (Bharucha et al., 2009).
Cognitive Stimulation Therapy
Cognitive stimulation therapy (CST) focuses on actively stimulating and engaging individuals with dementia by using theme-based activities in an optimal learning environment (typically, in a small-group setting).
Environmental modifications are changes or adaptations to the environment to improve communication skills in individuals with dementia. Modifications are aimed at optimizing the cognitive, visual, and auditory aspects of the environment and include improving lighting, reducing glare, and reducing visual clutter; minimizing background noise and noise reverberation; and providing cues (e.g., signs that incorporate text and simple graphics) and displaying personal items to improve memory, awareness, and orientation (Brush, Sanford, Fleder, Bruce, & Calkins, 2011).
External Memory Aids
External memory aids are aimed at helping individuals with memory problems in their day-to-day activities. They include electronic and non-electronic devices, as well as environmental adjustments. Examples include personal digital assistants (PDAs), message boards, clocks, and pictures.
Memory-training programs focus on improving/re-training memory skills using techniques such as spaced retrieval, errorless learning, procedural memory stimulation, vanishing cues, and didactic approaches.
Montessori-based treatments use principles developed by Maria Montessori (2008), including using real-life materials, designing activities that are of interest to the individual, allowing learning to progress in sequence, minimizing the risk of failure and maximizing the chance of success, and breaking down activities into component parts and practicing these one at a time.
Reality Orientation (RO)
Reality Orientation (RO) is a technique to reduce confusion and improve quality of life for individuals with dementia by providing orienting information (e.g., time, place, or person) to reinforce understanding and awareness of the environment. Information is repeated at regular intervals throughout the day.
Reminiscence Therapy (RT)
Reminiscence Therapy (RT) is an intervention approach that uses the life history and experience of an individual to improve his or her sense of well-being. RT programs typically involve the discussion of past activities, events, and experiences—using tangible prompts, such as photographs, familiar items, and music from the past. The customized nature and individual focus of reminiscence therapy make it an intervention particularly well suited for individuals from diverse backgrounds (Harris, 1997).
Simulated Presence Therapy (SimPres)
Simulated presence therapy (SIMPRES) is an emotion-oriented approach aimed at reducing levels of anxiety and challenging behaviors by playing audio recordings of the voices of close relatives of the individual. SIMPRES has been used to improve well-being (e.g., decrease agitation and withdrawal behaviors) in individuals with Alzheimer's disease who have adequate hearing and have retained communication skills (Bayles et al., 2006).
Validation therapy is an approach that involves validating or accepting the values, beliefs, and reality of the person with dementia to help reduce stress and provide opportunities for the individual to communicate his or her feelings; validation therapy was developed by Naomi Feil (1982) for individuals with cognitive impairment and dementia.
Individuals progressing through different stages of dementia may demonstrate difficulty feeding and swallowing. For example, individuals with moderately severe cognitive decline often demonstrate difficulty using a knife; individuals with severe cognitive decline may demonstrate difficulties discriminating between utensils; and individuals with very severe cognitive decline may be easily overwhelmed and require cues to locate food on the plate and to swallow (Voyzey, 2010). Swallowing function may also be affected by reduced muscle strength and coordination. Once appropriate feeding and swallowing strategies, postures, and consistencies have been identified, the clinician can train caregivers to provide feeding support and cuing as appropriate.
Diet modifications consist of altering the viscosity, texture, temperature, or taste of a food or liquid to facilitate safety and ease of swallowing. Typical modifications may include thickening liquids (e.g., water, coffee, juice) or softening, chopping, or pureeing solid foods. Taste or temperature of a food may be altered to provide additional sensory input for swallowing, and preferences of the individual are considered to the extent feasible. The nutritional needs of the individual and the safety of medical treatments (e.g., swallowing vitamin supplements or drinking thin liquids) are also considered before making modifications. A referral to a dietician is made as necessary.
Positioning techniques involve adjusting an individual's posture or position during feeding. These techniques aim to protect the airway and offer safe transit of food and liquid. No single posture will provide improvement to all patients/clients; rather, the general goal is to establish central alignment and stability for safe feeding.
Tube feeding includes supplemental or alternative avenues of intake (e.g., nasogastric tube [NG], transpyloric tube placed in the duodenum or jejunum, or gastrostomy-G-tube placed into the stomach or GJ-tube placed into the jejunum). These approaches may be used if the individual's swallowing safety and efficiency cannot reach a level of adequate function or does not support nutrition and hydration adequately. In these instances, the swallowing and feeding team considers whether the individual will need the supplemental or alternative source for a short or extended period of time to determine the optimum tube feeding selection to best meet the individual's needs. Alternative feeding does not preclude the need for feeding-related treatment.
The presence of dementia should not preclude fitting with a hearing aid; however, ongoing support may be necessary to ensure compliance with hearing aid use (Lewsen & Cashman, 1997). Although there is no current evidence that hearing aids can improve cognition in persons with dementia, problem behaviors (e.g., repeating questions, negative statements, forgetting, restlessness, pacing, "hearing things") can be improved with the use of amplification (Palmer, Adams, Bourgeouis, Durrant, & Rossi, 1999). In addition, elderly patients fitted with hearing aids during the early stages of hearing loss may retain cognitive function better than those who postpone fitting of hearing aids (Obuchi, Harashima, & Shiroma, 2011).
Given the relationship between hearing loss and dementia and the co-occurrence of hearing loss and dementia in aging adults, audiologists play a significant role in the treatment of these individuals. In addition to assessing the need for HATS, hearing aids, and cochlear implants, audiologists educate family members and caregivers on strategies to improve communication at home (e.g., improving listening environments) and provide ongoing counseling and support in the use of technology.
Speech-language pathologists (SLPs) working with individuals with dementia may be presented with a patient nearing the end of life. These patients introduce complex clinical and ethical issues around feeding and communication that impact the role of the SLP and other health care professionals.
The goal of intervention with patients at this stage is not rehabilitative, but facilitative or palliative. The SLP may be asked to participate in team decision making regarding the use of alternative nutrition, such as tube feeding (Landes, 1999), and may develop an alternative communication strategy, if appropriate, that will allow the individual to express his or her wants and needs more effectively. The expected outcome of intervention is not necessarily to improve abilities, but to allow the individual to use the abilities he or she still possesses to interact with family and friends and/or enjoy favorite foods, if that is the patient's wish.
The pattern of functional decline in individuals at the end of life varies, depending on a person's diagnosis. In dementia, the decline may be inconsistent over a long period of time. SLPs need to understand the process of dying to understand the emotional and psychological issues faced by their patients and patients' family members. The wishes of the patient and family are paramount when considering end-of-life issues, and the role of the SLP extends only as far as the patient or family wishes. What the SLP may think is best for the patient clinically may not always be accepted as best for the patient's quality of life. The document, 2004-2005 Ethics, Rights, and Responsibilities Standards of the Joint Commission on Accreditation of Healthcare Organizations, addresses this issue in Standard RI.2.80.
Views of the natural aging process and acceptance of disability vary by culture. Cultural views and preferences may not be consistent with medical approaches typically used in the U.S. health care system, but must be recognized and respected. The clinician approaches clinical interactions with cultural humility and demonstrates sensitivity to social and cultural influences when sharing potential treatment recommendations and outcomes. See end-of-life issues in speech-language pathology (ASHA, n.d.).
See the Service Delivery section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.
In addition to determining the type of treatment that is optimal for the person with dementia, the clinician considers other service delivery variables that may have an impact on treatment outcomes, such as
- Dosage-the frequency, intensity, and duration of service
- Timing-the timing of rehabilitation relative to the onset of dementia
- Format-whether a person is seen for treatment (e.g., individual, group, or in consultation with the family/caregivers)
- Provider-the person providing treatment (e.g., SLP, trained volunteer, caregiver)
- Setting-the location of treatment (e.g., home, nursing facility, community-based setting)
Ardila, A., & Ramos, E. (2010). Bilingualism and aging. Perspectives on Communication Disorders and Sciences in Culturally and Linguistically Diverse Populations, 17(3), 74-81. doi:10.1044/cds17.3.74.
Common Classifications of Dementia
Consumer Information: Dementia
Cultural Competence Practice Portal Page
End of Life Resources and References
Patient Information Handouts: Audiology Information Series
Riquelme, L. F. (2004, April 13). Cultural competence in dysphagia. The ASHA Leader.
SIG 2's Perspectives on
Neurophysiology and Neurogenic Speech and Language Disorder
SIG 13's Perspectives on
Swallowing and Swallowing Disorders (Dysphagia)
15's Perspectives on Gerontology
Organizations and Related Content
Alzheimer's Association New York City Chapter: Communicating
Alzheimer's Foundation of America
American Federal for Aging Research (AFAR)
Dementia Research Center
Gerontological Society of America
Harris Communications: Assistive Products for Deaf and Hard of Hearing
HITEC: Assistive Products for Deaf and Hard of Hearing
Medline Plus: Dementia
National Institute of Neurological Disorders and Stroke
National Institute on Aging: Alzheimer's Disease Education and Referral Center
Remember me? A guide to Alzheimer's disease and hearing loss
Weitbrecht Communications: Solutions for people with hearing loss
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