What Is Dementia?

Dementia is a syndrome resulting from acquired brain disease. It is characterized by a progressive decline in memory and other cognitive domains that, when severe enough, interferes with daily living and independent functioning.

This definition is consistent with the diagnostic category, major neurocognitive disorder (major NCD), as defined in the Diagnostic and Statistical Manual of Mental Disorders–5th Edition (DSM-5; American Psychiatric Association [APA], 2013). The diagnostic criteria for major NCD are

• a significant decline from previous levels of performance in one or more cognitive domains, including complex attention, executive function, learning, and memory, language, perceptual-motor, or social cognition (preferably documented by standardized testing or clinical assessment);
• cognitive deficits interfere with independence in everyday activities;
• cognitive deficits do not occur exclusively in the context of delirium; and
• cognitive deficits are not better explained by other mental disorders, such as major depressive disorder or schizophrenia (APA, 2013).

Behavioral problems (e.g., paranoia, hallucinations, and repetitiousness) may also develop as a result of the neuropathology and may interfere with communication.

Cognitive and behavioral symptoms of dementia are differentiated from those of temporary or treatable conditions, including the following:

• 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, including
  • infections (e.g., urinary tract infection [UTI], meningitis, syphilis);
  • toxicity (e.g., drug-induced dementia, toxic metal exposure);
  • vitamin B-12 deficiency;
  • metabolic disorders (e.g., kidney failure);
  • hormonal dysfunction (e.g., thyroid problems); and
  • pseudodementia due to psychiatric disorders (e.g., depression, generalized anxiety disorder, schizophrenia, mania, conversion disorders).

Unlike these conditions, the symptoms associated with dementia continue to progress in severity until death (see, e.g., Bourgeois & Hickey, 2009). The following are common neurodegenerative diseases that cause dementia. This list is not exhaustive.

• Alzheimer’s disease (the leading cause of dementia)
• Lewy body disease
• Vascular pathology (e.g., multi-infarct dementia)
• Frontotemporal dementia (FTD)—Pick’s disease (behavioral variant) and primary progressive aphasia (language variant)
• Huntington’s disease
• Parkinson’s disease

Other conditions that may 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);
• multiple sclerosis; and
• human immunodeficiency virus (HIV).

Mild Cognitive Impairment

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 before the diagnosis (Amieva et al., 2005).

Some older adults report a decline in cognitive abilities that may not be evident upon objective cognitive testing (Jessen et al., 2014). This subjective cognitive decline is associated with an increased risk of progression to mild cognitive impairment (MCI) and dementia (Jessen et al., 2014).

MCI is described as an “intermediate stage of cognitive impairment that is often, but not always, a transitional phase from cognitive changes in normal ageing to those typically found in dementia” (Petersen et al., 2014, p. 214). Early identification of MCI might enable the use of cognitive interventions to slow the progression of decline (Qualls, 2005).

Unlike dementia, the cognitive decline associated with MCI does not interfere with independence in everyday activities (see, e.g., McKhann et al., 2011). This definition of MCI is consistent with the diagnostic category, of mild neurocognitive disorder (mild NCD), as defined in the DSM-5 (APA, 2013). The clinical criteria for diagnosing mild NCD are

• a modest decline from previous levels of performance in one or more cognitive domains, including complex attention, executive function, learning, and memory, language, perceptual-motor, or social cognition (preferably documented by standardized testing or clinical assessment);
• cognitive deficits do not interfere with the ability to independently perform everyday activities (although some may require greater effort or the use of compensatory strategies),
• cognitive deficits do not occur exclusively in the context of a delirium, and
• cognitive deficits are not better explained by other mental disorders, such as major depressive disorder or schizophrenia (APA, 2013).

Early Onset Dementia

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), lack of awareness about the condition—even among health care professionals (Jefferies & Agrawal, 2009), and misdiagnosis (van Vliet et al., 2011). In addition, some causes of EOD are curable (e.g., infection, metabolic toxins), which makes the need for timely and accurate diagnosis even more crucial (Fadil et al., 2009).

Incidence refers to the number of new cases of a disorder identified in a specified period. Prevalence refers to the number of people who are living with the disorder in a given period.

Worldwide

Worldwide, an estimated 50 million people are living with dementia (World Health Organization [WHO], 2017). These numbers are projected to reach 82 million by the year 2030 and 152 million by 2050, with the majority of individuals coming from low- and middle-income countries (Alzheimer’s Disease International, 2015; WHO, 2017). Globally, the annual number of new cases of dementia is 9.9 million (Alzheimer’s Disease International, 2015). These estimates are approximately 30% higher than the annual numbers reported in 2010 (7.7 million new cases, according to a 2012 report by WHO and Alzheimer’s Disease International).

United States

Within the United States, approximately 5.7 million people are living with dementia (Alzheimer’s Association, 2018; Plassman et al., 2007). Alzheimer’s disease accounts for approximately 60%–70% of these cases, followed by vascular dementia (National Institute on Aging, 2017; WHO, 2017). Similar to the global trends, these numbers are expected to rise as life expectancy increases. The total number of individuals living with Alzheimer’s dementia is projected to be 13.8 million by 2050 (Hebert, Weuve, Scherr, & Evans, 2013). An additional study by Matthews et al. (2018) projects that 13.9 million individuals aged 65 years or older will be diagnosed with Alzheimer’s disease or related dementias in the United States by 2060.

Trends

While the number of adults living with dementia in the United States and other countries is expected to grow exponentially by 2050 with increased life expectancy, recent studies suggest that age-specific risk (i.e., the risk of dementia at a specific age) has declined over the past 30 years in some high-income countries, including the United States, England, and the Netherlands (Hudomiet, Hurd, & Rohwedder, 2018; Langa et al., 2017; Matthews et al., 2013; Satizabal et al., 2016; Schrijvers et al., 2012).

A study by Langa et al. (2017) found that the number of new cases of dementia in adults 65 years and older in the United States fell by 24% in 12 years—from 11.6% in 2000 to 8.8% in 2012. A corresponding decrease in the number of adults 65 and older living with dementia in the United States (from 12.0% in 2000 to 10.5% in 2012) was reported in a study by Hudomiet and colleagues (2018). This trend may, in part, be due to higher education levels, better access to health care, and improvements in cardiovascular treatments.

The symptoms of dementia can differ depending on the cause of dementia and the stage of the disease. Although late-stage signs and symptoms may be similar across etiologies, early-stage symptoms can vary considerably. For example, individuals with FTD 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).

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.

Listed below are examples of common signs and symptoms of dementia. Not every person with dementia will experience all of these symptoms, and symptoms can vary depending on the underlying neuropathology and individual differences.

Attention

• Easily distracted
• Difficulty attending, unless the input is restricted/simplified
• Decreased information-processing speed—thinking/processing takes longer than usual

Learning and Memory

• Episodic memory deficits, including difficulty remembering autobiographical events, situations, and experiences
• Short-term/working memory deficits—rapid forgetting of information recently seen or heard
• Difficulty recalling names of family and friends
• Difficulty acquiring and remembering new information (e.g., appointments or events, new routines) without specific supports or strategies

Reasoning and Executive Functioning

• 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 (e.g., making decisions without regard to safety)
• Difficulty multitasking and handling complex tasks—need to focus on one task at a time
• Difficulty responding to feedback
• Poor self-monitoring and ability to correct own errors
• Lack of inhibition
• Lack of mental flexibility

Perceptual Abilities

• Difficulty completing previously familiar activities or navigating in familiar environments
• Inability to recognize familiar people, common objects, sounds, and so forth
• Inability to find objects in direct view, independent of visual acuity
• Other visuoperceptual difficulties, such as trouble with depth perception and sensitivity to light

Language

• Less concise (empty) discourse with fewer ideas
• The economy of utterances (using fewer words) and stereotypy of speech
• Repetitious/perseverative language (e.g., asking the same question repeatedly)
• Word-finding difficulties signaled by long latencies, paraphasias, and word substitutions
• In bilingual people, errors in selecting and maintaining the appropriate language during the conversation (Friedland & Miller, 1999)
• In bilingual people, regression to primary language (Kokorelias, Ryan, & Elliot, 2017; Mendez, Perryman, Pontón, & Cummings, 1990)
• Tangential language
• Circumlocution
• Grammatical errors, including omission or incorrect use of articles, prepositions, auxiliary verbs, and so forth
• Use of jargon and loss of meaningful speech
• Impaired ability to compose the meaningful written language
• Difficulty following and maintaining a conversation
• Language comprehension deficits
• Difficulty following multistep commands
• Reading comprehension difficulties with complex materials

Behavioral and Psychosocial

• Anger and aggression
• Anxiety or agitation
• Forgetfulness and confusion
• Repetitive actions
• New suspicions
• Wandering and getting lost
• Trouble sleeping
• Mood fluctuations, including agitation and crying
• Negative reaction to questioning
• Loss of initiative and motivation

Behavioral and psychosocial symptoms are common in dementia (see, e.g., Müller-Spahn, 2003). Responsive behaviors—a subset of these symptoms—are thought to be expressions of unmet needs (e.g., pain), responses to the environment (e.g., overcrowding), expressions of psychosocial needs (e.g., depression), and responses to caregivers and other individuals.

Behavioral and psychosocial changes can lead to frustration and misunderstanding between the individual with dementia and his or her caregiver. Since these reactions are often forms of communication, it is important for caregivers to consider why the behavior is occurring and to explore ways to facilitate better communication (e.g., react differently, be understanding, modify/adapt to the environment, and focus on a different activity).

Impact of Cognitive Changes on Communication

The cognitive changes associated with dementia can have a significant impact on day-to-day communication. For example, a decline in memory, attention, executive functioning, and/or language processing can make it difficult to follow and participate in the conversation.

Individuals may

• process information more slowly;
• lose track of the topic;
• miss the point; and
• repeat information.

With the more significant cognitive decline,

• they may become disoriented to time and place;
• they may have difficulty remembering recent events;
• their verbal output may be reduced and less substantive; and
• their ability to express thoughts wants and needs may be affected.

Eating and Swallowing Difficulties

Swallowing function changes as we age. These changes may be more pronounced in individuals with dementia, and swallowing difficulties may appear sooner (Groher, 2015). Overall, 13%–57% of individuals with dementia have swallowing impairment (Alagiakrishnan, Bhanji, & Kurian, 2013). Rates of swallowing impairment for individuals with dementia in long-term care may be as high as 53%–60% (Alagiakrishnan et al., 2013; Park et al., 2013).

Difficulties are not limited to swallowing dysfunction—cognitive and behavioral changes associated with dementia can also have an impact on eating. Early on, individuals may have difficulty shopping for groceries and planning and preparing meals independently (Arrighi, Gélinas, McLaughlin, Buchanan, & Gauthier, 2013; Hickey, Cleary, Coulter, & Bourgeois, 2018). They may forget to eat, initiate eating less often, or have difficulty determining the need to eat (Arrighi et al., 2013; Bourgeois & Hickey, 2009). As the disease progresses, they may become more distracted during mealtime or have difficulty self-feeding, recognizing foods, or using various eating utensils (Aselage & Amella, 2011; Bourgeois & Hickey, 2009; Lee & Song, 2015; Rogus-Pulia, Malandraki, Johnson, & Robbins, 2015; Wu & Lin, 2015).

Eating and swallowing difficulties may place an individual at greater risk for choking and aspiration pneumonia (Bourgeois & Hickey, 2009) and may eventually result in malnutrition, dehydration, and weight loss (Hanson, Ersek, Lin, & Carey, 2013; Jensen, Compher, Sullivan, & Mullin, 2013).

Alzheimer’s disease is the most common cause of dementia, accounting for approximately 70% of all cases (Plassman et al., 2007).

The remaining cases are accounted for by vascular dementia, Lewy body dementia, Parkinson’s disease, frontotemporal dementia, and mixed dementia types (e.g., Alzheimer’s disease with Lewy body pathology and Alzheimer’s disease with vascular pathology; Livingston et al., 2017; Mahendra & Hopper, 2013; Plassman et al., 2007). See ASHA’s resource on common dementias.

Most dementias are the result of neuropathology stemming from (a) diffuse degeneration in cortical and/or subcortical structures and neural pathways and/or (b) chemical changes that affect neural functioning.

Structural changes include neurofibrillary tangles and neuritic plaques—both commonly associated with Alzheimer’s disease—and loss of neural pathways (connections between neurons) responsible for memory and new learning.

Chemical changes include (a) cholinergic deficits within the subcortical structures as in Alzheimer’s disease or (b) chemical imbalances associated with metabolic disorders.

Modifiable risk factors for dementia are those that, if eliminated, can potentially prevent some cases of dementia. Based on available data and models of dementia risk, Livingston et al. (2017) describe nine modifiable life-course risk factors for dementia. These factors are grouped below by age range across the lifespan.

Early life (< 18 years)

• Less education (none or primary school only)

Middle life (45–65 years)

• Hypertension
• Obesity
• Hearing loss

Later life (> 65 years)

• Smoking
• Depression
• Physical inactivity
• Social isolation
• Diabetes

Based on their analysis, Livingston et al. (2017) estimate that about 35% of dementia can be attributed to a combination of these nine factors. Mechanisms that may be linked to these risk factors include vascular damage to the brain that increases the risk of vascular lesions, atrophy, and neurodegeneration; less available cognitive reserve (see “Reserve” subsection below); and metabolic changes that affect amyloid clearance. See Livingston et al. (2017) for details and a summary.

Nonmodifiable Risk Factors

Nonmodifiable risk factors are those that cannot be changed or modified by the individual. They include age and heredity.

Age is the greatest nonmodifiable risk factor for dementia. Every 5 years after age 65, the number of individuals with Alzheimer’s disease doubles; about one-third of people over age 85 have the disease (National Institute on Aging, 2017).

Heredity can play a part in dementia risk. For example, the risk of acquiring dementia is higher if an individual has a first-order relative with the disease (Green et al., 2002; Lovestone, 1999; Wolters et al., 2017). This risk may be linked to the inheritance of the Apolipoprotein E (ApoE) gene (e.g., Green et al., 2002; Lovestone, 1999) or to unexplained hereditary causes (Wolters et al., 2017).

Reserve

The concept of the reserve was introduced to account for the observation that there does not seem to be a direct relationship between the amount of brain damage or pathology and the degree of disruption in performance (Stern, 2002, 2003, 2006, 2009). Reserve applies to most situations in which disruption to brain functioning occurs, including traumatic brain injury, stroke, and dementia. The concept is often used to explain differences in susceptibility to brain changes related to aging or Alzheimer’s disease (Livingston et al., 2017; Stern, 2012).

Models used to explain the concept of reserve fall into two general categories—passive and active. Passive models (Katzman, 1993; Satz, 1993) explain reserve in terms of “brain reserve capacity” (BRC) and include brain size and synapse count. There are individual differences in BRC such that, given the same brain damage or pathology, individuals with more BRC are less likely to manifest clinical deficits than individuals with less BRC (Stern, 2003).

Active models (e.g., cognitive reserve [CR]) focus on how tasks are processed, rather than on physiologic differences in the brain itself (Stern, 2003, 2012). These models suggest that some individuals use neural networks or cognitive processing approaches that are more efficient and less susceptible to damage, or they use compensatory approaches not normally used before injury (Stern, 2002, 2009, 2012). Individual differences exist such that, given the same brain damage, those with greater CR are better able to cope than those with less CR (Stern, 2012).

Factors that Affect Reserve

Lifestyle factors such as higher education, physical activity, intellectual stimulation, and social involvement are associated with a lower risk of dementia. These factors are thought to increase reserve, which in turn increases the capacity to cope with brain injury or pathology (e.g., Livingston et al., 2017; Stern, 2012).

In addition to lifestyle factors, lifelong bilingualism may also contribute to cognitive reserve (see Guzmán-Vélez & Tranel [2015] for a review). In studies comparing bilingual and monolingual individuals, bilinguals demonstrated the onset of dementia symptoms approximately 4–5 years later than monolinguals (Bialystok, Craik, & Freedman, 2007; Craik, Bialystok, & Freedman, 2010). The cognitive demands of bilingualism may contribute to increased cognitive reserve in much the same way as do other stimulating activities (Craik et al., 2010). These results cannot be generalized to individuals who are not fully bilingual (Bialystok et al., 2007).

Hearing Loss and Dementia

Overall, 15% of the adult population in the United States aged 18 and older report having some trouble hearing (Blackwell, Lucas, & Clarke, 2014). Self-reported hearing loss increases with age, with 5.5% of adults ages 18–39, 19% of adults ages 40–69, and 43% of adults over age 70 reporting difficulty hearing without a hearing aid (Zelaya, Lucas, & Hoffman, 2015).

Adjusting for other risk factors (e.g., education, diabetes, cardiovascular factors), studies show that hearing loss is independently associated with an increased risk of dementia (Deal et al., 2017; Lin et al., 2011). For individuals over 60 years of age, more than one-third of the risk of all-cause dementia was found to be associated with hearing loss (Lin et al., 2011).

Further, individuals with baseline hearing loss were found to have greater rates of cognitive decline over time than individuals with normal hearing (Lin et al., 2013), and the mean time to develop dementia was reported to be faster for individuals with self-reported hearing loss than for individuals without self-reported hearing loss (Gurgel et al., 2014).

Several hypotheses have been proposed to account for the association between hearing loss and dementia. They include the following:

• The common cause hypothesis—suggests that hearing loss and dementia share the same etiology (neural degeneration associated with aging), but one does not cause the other (Baltes & Lindenberger, 1997; Lindenberger & Baltes, 1994).
• Cascade hypothesis—suggests that sensory deprivation (secondary to hearing loss) leads directly to impoverished cortical sensory input and indirectly to social isolation and depression, both of which in turn leads to cognitive decline (see, e.g., Baltes & Lindenberger, 1997; Lindenberger & Baltes, 1994; Stahl, 2017; Tun, McCoy, & Wingfield, 2009).
• The cognitive load hypothesis—suggests that when hearing loss is present, greater cognitive resources are dedicated to auditory processing, leaving fewer resources for other cognitive processes like working memory that is involved in the processing and comprehension of speech (see, e.g., Baltes & Lindenberger, 1997; Lindenberger & Baltes, 1994; Martini, Castiglione, Bovo, Valley, & Gabelli, 2014; Peelle, Troiani, Grossman, & Wingfield, 2011).

It is possible that the mechanism proposed by each of these hypotheses is not mutually exclusive, and that each contributes individually or in combination to increase the risk of dementia. Further investigation is needed to clarify the relationship between hearing loss and dementia (Loughrey, Kelly, Kelley, Brennan, & Lawlor, 2018; Thomson, Auduong, Miller, & Gurgel, 2017).

Roles and Responsibilities of Speech-Language Pathologists

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

Appropriate roles for SLPs include the following:

• 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
• Screening individuals with cognitive-communication difficulties and determining the need for further assessment
• Conducting a culturally and linguistically relevant comprehensive assessment of cognitive-communication functioning and swallowing
• Diagnosing cognitive-communication disorders associated with dementia
• Assessing, diagnosing, and treating swallowing disorders associated with dementia
• Counseling persons with dementia and their families regarding communication-related issues and providing information about the nature of dementia and its course
• 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
• Developing treatment plans; providing treatment to maintain cognitive-communication and functional abilities at the highest level throughout the underlying disease; and documenting treatment outcomes
• Serving as an integral member of an interdisciplinary team working with individuals with dementia and their families/caregivers
• Monitoring cognitive-communicative status to ensure appropriate intervention and support throughout the underlying disease
• Providing indirect intervention through the individual’s caregivers and environmental modification
• Consulting and collaborating with other professionals, family members, caregivers, and others to facilitate program development throughout the underlying disease and to ensure a continuum of care
• Remaining informed of research in the area of cognitive communication and swallowing deficits associated with dementia, and helping advance the knowledge base related to the nature and treatment of these conditions
• Advocating for individuals with dementia and their families at the local, state, and national levels, and providing expert testimony when appropriate

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 of the common dementia-associated diseases are progressive, 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.

Interprofessional Collaboration

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—help ensure quality service for individuals affected by communication and cognitive disorders. Coordinating assessments can prevent overlap in test selection. Ultimately, the focus of collaborative efforts must be on the clinical usefulness of the information and on how professionals with complementary knowledge and skills can affect functional outcomes for individuals.

Roles and Responsibilities of Audiologists

Audiologists play a critical role in the assessment and care of individuals with dementia. The professional roles and activities in audiology include clinical services related to hearing loss (assessment, diagnosis, planning, and treatment); prevention and advocacy; and education, administration, and research.

Appropriate roles for audiologists include the following:

• Providing information to individuals and groups at risk for hearing loss and educating them on the link between hearing loss and dementia
• Educating other professionals, third-party payers, and legislators on the needs of persons with dementia and hearing loss
• Screening individuals with possible hearing loss and determining the need for further assessment
• Conducting a comprehensive audiology assessment and diagnosing hearing loss when present
• Recognizing behaviors (e.g., cognitive and memory changes) associated with dementia and helping to determine if these behaviors may be related to the individual’s hearing loss
• Screening for cognitive impairment (e.g., memory function) and determining the need for further assessment by an SLP and other professionals as appropriate
• Counseling persons with dementia and their families regarding the impact of hearing loss on communication
• Providing audiology treatment to individuals with dementia that optimizes communication and social engagement throughout the disease
• Serving as an integral member of an interdisciplinary team to ensure comprehensive services and a continuum of care for individuals with dementia and their families/caregivers
• Providing indirect intervention through the individual’s caregivers, and recommending environmental modifications and other techniques to facilitate communication
• Remaining informed of research in the area of hearing loss and dementia, and helping advance the knowledge base related to the nature and treatment of these conditions
• Advocating for individuals with dementia and their families at the local, state, and national levels, and providing expert testimony when appropriate

As audiologists who serve this population should be specifically educated and appropriately trained to do so. Given the relationship between hearing and dementia, audiologists who serve individuals with dementia require knowledge and skills in both areas as well as knowledge of cognitive-communication problems associated with dementia.

Most of the common dementia-associated diseases are progressive, and audiologists have an ethical responsibility to provide appropriate services that will benefit the individual and maximize communication functioning at all stages of the disease process.

The diagnosis of dementia is made by a medical team. The role of the 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, linguistic, and environmental influences that have an impact on functioning.

The assessment is sensitive to cultural and linguistic diversity and should occur in the language(s) used by the person with dementia.

SLPs often conduct assessments in collaboration with clinical neuropsychologists.

Screening

Screening for cognitive impairment is conducted for individuals with any condition that increases the risk of cognitive-communication problems. The screening is conducted by an SLP, audiologist, or another member of the interdisciplinary care team working with the individual.

Standardized instruments with demonstrated reliability for dementia screening 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 early dementia (Bayles & Tomoeda, 1993; Rabin et al., 2009; Takayama, 2010; Wechsler, 2009). If screening reveals cognitive impairment, the individual is referred to an SLP for a comprehensive evaluation of communicative function.

Before screening for cognitive-communication disorders, it is important to consider the impact of sensory impairment (hearing and vision), depression, and current medications on cognitive functioning.

Hearing Loss

Hearing loss is a common consequence of aging, and many older adults have both hearing loss and cognitive impairment. Together, these losses can affect communication, social participation, and quality of life (Pichora-Fuller, Dupuis, Reed, & Lemke, 2013). Therefore, 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.

Audiometric hearing screening and otoscopic inspection for impacted cerumen are to be conducted before the cognitive-communication screening.

If an individual has a diagnosed hearing loss and wears hearing aids, the clinician inspects the aids to ensure that they are in working order, and the individual should wear them during screening. The use of assistive listening technology should be employed when hearing aids are not being used.

If the individual fails the hearing screening, a referral is made to an audiologist for a comprehensive audiological assessment.

Visual Impairment

If visual deficits are suspected, the individual is referred for vision testing before completing cognitive-communication screening. Prescription eyeglasses, as needed, are to be worn during screening, and adequate lighting is to be used in the test (and treatment) environment.

Depression

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 and 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.

Medications

Before the screening, the SLP considers the effects of prescription drugs on cognitive-communicative function. Polypharmacy—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.

Comprehensive Assessment

A comprehensive assessment includes an assessment of language and communication. It may also include an assessment of swallowing and a complete audiological assessment.

Consistent with the World Health Organization’s (WHO’s) International Classification of Functioning, Disability, and Health (ICF) framework (ASHA, 2016a; WHO, 2001), a comprehensive assessment is conducted to identify and describe

• impairments in body structure and function, including factors that affect communication performance (e.g., cognition, language, and social/behavioral as well as swallowing, when affected);
• co-morbid deficits or health conditions such as hearing loss or depression;
• limitations in activity and participation, including limitations in functional communication and interpersonal interactions;
• contextual (environmental and personal) factors that serve as barriers to, or facilitators of, successful communication and participation in ideal settings, everyday contexts, and employment settings; and
• the impact of impairments on the quality of life for the individual and his or her family and community.

Assessments 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 (e.g., yearly) reevaluations are essential to adjust care plans to meet the changing needs of the individual.

SLP Assessment

The SLP determines the most appropriate assessment protocol based on the stage of dementia and the individual’s communication needs and wishes. The information gathered during the assessment will guide the development of person-centered intervention focused on maximizing the individual’s ability to participate in meaningful activities (e.g., Bourgeois, 2015; Chapey et al., 2000; Hickey, Khayum, & Bourgeois, 2018).

The protocol may include standardized and nonstandardized assessment tools and a variety of other data sources, including clinical observations in the home or long-term care setting. These observations provide personally relevant information about the individual’s cognitive-communication strengths and needs in everyday situations. Conversations with the individual and his or her family and caregivers can help identify the individual’s personal goals for continued, meaningful life participation.

Several assessment tools have been standardized on individuals with dementia. They can be used to evaluate language comprehension and expression and the integrity of working, declarative, and procedural memory systems. The severity of dementia needs to be taken into consideration when selecting tests. Some tests are too difficult for individuals with severe dementia and do not yield useful information.

When selecting standardized assessments, the clinician considers the cultural and linguistic background of the client and, when available, uses tests that have normative samples of culturally and ethnically diverse groups. Standard scores should not be reported if the normative sample is not representative of the individual being assessed.

Audiologic Assessment

Traditional behavioral tests of hearing (e.g., pure-tone and speech audiometry) are generally successful in the early stages of dementia, although modifications may be needed. These include simplifying directions, using pulse tones, slowing the presentation of speech stimuli, providing reminders to respond, and allowing a “yes” response instead of raising a finger or pressing a button.

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).

Typical Components of the Comprehensive Assessment

Case History

• Medical status and medical history
• Review of auditory, visual, motor, cognitive, and emotional status
• Demographic information (e.g., educational level, marital status, occupation)
• Current living arrangements and available supports
• Language(s) spoken

Interview with Individual

• Report cognitive changes (e.g., memory loss, forgetfulness, disorientation, getting lost)
• Impact of changes on functional communication and life participation
• Contexts of concern (e.g., social interactions, work activities)
• Language(s) used in contexts of concern
• Goals for continued functional communication and life participation

Interview with Family/caregivers

• Observations of cognitive changes
• Impact of changes on individual’s functional communication and ability to participate fully in everyday activities
• Impact of changes on individual’s safety and safety awareness
• Contexts of concern (e.g., social interactions, family discussions, and decision-making)

Cognitive-communication

• Observation of the individual’s communication and level of participation during everyday activities (e.g., mealtime; conversations with friends, family, and caregivers)
• Assessment of ability to process various types of information (e.g., attend to, perceive, organize, and remember verbal and nonverbal information) under ideal conditions and in the context of various activities and settings
• Assessment of executive or self-regulatory control (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 task modifications to facilitate performance
• Identification of the individual’s potential for using effective compensatory strategies and identification of motivational barriers and facilitators to using these strategies
• Evaluation of current communication and support competencies of relevant people in the individual’s life

Assessment of Swallowing

Clinical Assessment

• Involves food and liquid trials with a variety of temperatures, textures, tastes, postures, and strategies and consideration for the individual’s food preferences
• Includes evaluation of the
  • oral mechanism;
  • ability to comprehend and use compensatory strategies;
  • oral preparatory, oral, pharyngeal, and esophageal phases of swallowing;
  • recognition of food and utensils;
  • impact of the appearance of food, lighting, and distractions on swallowing function;
  • the potential impact of medications on swallowing function; and
  • influence of cognitive factors on feeding and swallowing.

Instrumental Assessment

• Conducted when indicated and as tolerated by the individual
• Used to determine swallowing safety and identify effective treatment techniques or strategies
• Can provide information about the oral and pharyngeal bolus transit, airway protection, the impact of bolus texture and size, and appropriate pacing (Easterling & Robbins, 2008)

Audiologic Assessment

• Otoscopic examination
• Immittance testing to assess middle ear function
• Pure-tone air and bone conduction to determine the presence and type of hearing loss
• Otoacoustic emissions testing to assess outer hair cell function
• Word recognition (discrimination)
• Speech recognition (closed or open set, depending on age)

Assessment Results

The comprehensive assessment may result in

• diagnosis of a cognitive communication and/or swallowing disorder;
• diagnosis of hearing loss;
• clinical description of the characteristics of the disorder(s);
• identification of the individual’s communication needs and his or her goals for life participation;
• identification of facilitators and barriers to life participation;
• recommendations for intervention and support; and
• referral for other assessments or services.

Assessment in Long-Term Care Communities

The Omnibus Budget Reconciliation Act (1987) mandates the evaluation of the physical and psychological status of residents in long-term care communities 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 individuals living in long-term care communities.

Most of the common dementia-associated diseases are progressive, and goals will change throughout treatment as communication needs and abilities change. SLPs have an ethical responsibility to provide services that maximize cognitive communication functioning at all stages of the disease process.

Decisions about goals and treatment options are made in collaboration with the individual, family and caregivers, and other health professionals. At the beginning and throughout treatment, SLPs share information about dementia with the individual and their family/caregivers and provide family counseling and caregiver training.

The person-centered intervention focuses on maximizing the individual’s ability to participate in meaningful activities (e.g., Bourgeois, 2015; Chapey et al., 2000; Hickey, Khayum, & Bourgeois, 2018). SLPs consider the individual’s cultural and linguistic background, social history, present social context, communication needs, and personal desires when developing a treatment plan and formulating functional, personally relevant goals. SLPs must ask the individual about his or her wishes for continued care over time, including feeding and swallowing directives.

Consistent with the WHO (2001) framework, person-centered 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 helping the person acquire new skills and strategies; and
• modify contextual factors that serve as barriers and enhance facilitators of successful communication and participation, including the development and use of appropriate accommodations in the environment.

Person-centered communication goals can focus on

• linguistic processing in the context of various activities and settings;
• executive or self-regulatory skills, such as goal setting, self-monitoring, and problem-solving;
• use of effective compensatory techniques and strategies for communicating;
• use of alternative and/or augmentative methods to support communication; and
• initiating or maintaining routines or roles in the individual’s living community.

Audiology services (e.g., hearing aids, hearing assistive technology) may be indicated for individuals with hearing loss.

Cultural and Linguistic Considerations

Treatment occurs in the language(s) used by the person with dementia, either by a bilingual SLP or through the use of trained interpreters, when necessary.

Cultural influences and familial expectations may affect treatment decisions (Hinton, Fox, & Levkoff, 1999; Low et al., 2009; Parker, Young, & Rogers, 2010; Whitlatch & Feinberg, 2003; Williams & Harvey, 2013; Winslow & Flaskerud, 2009).

Cultural values, views of the aging process, and religious and spiritual beliefs relative to cognitive decline may influence a family’s decisions about therapeutic services. For example, families may not seek help, or they may delay seeking help until symptoms are beyond early or mild stages (Hart, Gallagher-Thompson, Davies, DiMinno, & Lessin, 1996; Pachana & Gallagher-Thomson, 2018; Regan, 2014). Families may fear the stigma of dementia, and this can also affect decisions about seeking help (Benbow & Jolley, 2012).

Dementia can have a significant impact on individuals in the LGBTQ community. For example, transgender individuals with dementia may experience periods of confusion about medical issues related to their natal gender (e.g., prostate cancer or uterine cancer), or about self-care and other daily tasks related to external gender changes (Age UK, 2013). Dementia may also make it challenging for LGBTQ individuals to manage disclosure—they may lose some ability to determine whom they share this information with (Barrett, Crameri, Lambourne, Latham, & Whyte, 2015).

Older LGBTQ individuals with dementia often experience a loss of identity, as a lack of cultural competence can lead to discrimination based on age, sexuality, and the stigma associated with dementia (McGovern, 2014). Care facilities should be sensitive to the needs of older LGBTQ patients and provide them with accommodations consistent with their expression (Voyzey, 2015).

Caregiver Training

Family members and those who care for individuals with dementia are faced with challenges that can affect their health and well-being (Gilhooly et al., 2016; Raggi, Tasca, Panerai, Neri, & Ferri, 2015; Snyder et al., 2015). Changes in communication functioning due to cognitive decline, together with behavioral changes, can have a significant impact on day-to-day interactions and can result in considerable frustration. SLPs work with families and caregivers to help them understand and manage these changes, minimize stress and frustration and provide a supportive environment for individuals with dementia.

Training families and caregivers to use effective strategies that enhance communication may help them understand and repair communication breakdowns, engage in conversation more successfully, and improve the quality of life for the individual with dementia (Zientz, Rackley, Chapman, Hopper, & Mahendra, 2007).

Treatment Options

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 general and specific treatments for persons with cognitive-communication disorders associated with dementia. Some treatment approaches are considered compensatory, and some are considered restorative. Compensatory treatment approaches focus on teaching the individual specific 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.

This list is not exhaustive, and the inclusion of any specific treatment approach does not imply endorsement by ASHA.

Assistive Technology

Assistive technology (AT) includes assistive, adaptive, and rehabilitative devices and services for individuals with disabilities. An AT 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.

Several commercially available and emerging assistive technologies (e.g., memory aids and navigational tools) may have applications for dementia care (Bharucha et al., 2009). Selection of specific AT devices and systems will depend on the stage of dementia; individuals in the early stages of the disease will most likely be able to use a wider range of devices and systems than will individuals in the later stages (e.g., Collins, 2018).

Hearing Assistive Technology Systems (HATS) can be used to enhance face-to-face communication. HATS are available for individuals with hearing loss who currently use hearing aids or have cochlear implants and for individuals with untreated hearing loss. HATS include FM systems, induction loops, and personal amplification devices.

Cognitive Stimulation Therapy

Cognitive stimulation therapy (CST) is a group treatment for individuals with mild to moderate dementia. CST uses theme-based, mentally stimulating, relevant activities aimed at improving cognitive function (e.g., thinking, concentration, and memory). Individuals are actively engaged in optimal learning environments—typically, in a small-group setting (e.g., Aguirre, Woods, Spector, & Orrell, 2013; Woods, Aguirre, Spector, & Orrell, 2012).

Computer-Based Cognitive Interventions

Computer-based treatment involves the use of computer technology (e.g., touchscreen tablets) and/or software programs to increase mental activity and enhance cognitive functioning, including processing speed, attention, and working memory (e.g., Barnes et al., 2009). Some available programs generate data about the individual’s progress on specific tasks; these data can be used in clinical documentation.

In addition to using programs to target specific cognitive functions, computers can also be used to perform relevant, day-to-day tasks such as emailing friends and keeping track of appointments.

Environmental Modifications

Environmental modifications are changes or adaptations to the environment to improve overall functioning in individuals with dementia. They are designed to support communication needs and abilities by reducing barriers and minimizing the impact of impaired body function.

Modifications are aimed at enhancing the following aspects of the environment:

• Cognitive—includes using personalized living spaces to aid memory and orientation, labels, signs that incorporate text and simple graphics, step-by-step sequencing cards to guide activities, cues to support “way-finding” and orientation, and verbal instructions
• Visual—includes reducing glare, improving lighting, reducing visual clutter, arranging items (e.g., furniture and personal items) in an organized way, and providing a clear line of sight to items and locations (e.g., bathroom)
• Auditory—includes minimizing background noise (e.g., TV, radio) when possible; improving audibility by reducing noise reverberation (e.g., by using rugs and drapery); and using amplification devices when needed (Brush, Sanford, Fleder, Bruce, & Calkins, 2011)

Assessing the individual’s performance in relevant settings (e.g., home, social setting, clinical setting) is essential for identifying relevant environmental barriers and facilitators and potential modifications (Brush et al., 2011; Brush, Calkins, Bruce & Sanford, 2012).

External Memory Aids

External memory aids are aimed at helping individuals with memory problems in their day-to-day activities. They help compensate for memory deficits, maximize independence, improve conversation, reduce anxiety, and decrease responsive behaviors such as repetitive questioning (Bourgeois, 1994; Hickey & Bourgeois, 2018).

External memory aids include enhancements to cognitive aspects of the environment (see the “Environmental Modifications” section of this document), checklists, daily planners, calendars, programmable watches, pill reminders, smartphones, and recorded messages (e.g., voicemails). External aids such as memory books, memory wallets, and communication cards can also be used to help an individual retrieve personal information for stimulating and maintaining conversation (e.g., Bourgeois 1990, 1992a, 1992b, 2013; Hickey & Bourgeois, 2018).

External memory aids in the form of tangible prompts (e.g., photographs, familiar items, and music from the past) are used in reminiscence therapy to stimulate conversations about past events, activities, and experiences. The customized nature and individual focus of reminiscence therapy make it well-suited for individuals from diverse backgrounds (Harris, 1997).

Montessori for Aging and Dementia

Montessori for Aging and Dementia is a person-centered approach based on the work of Dr. Maria Montessori. This approach focuses on the abilities, needs, interests, and strengths of elders with dementia in a supportive environment. It empowers individuals to engage in meaningful activities throughout their lives (see, e.g., Bourgeois, Brush, Elliot, & Kelly, 2015; Brush & Norris, 2017; Elliot, 2015).

Characteristics of a typical Montessori classroom (e.g., freedom, structure and order, reality and nature, beauty and atmosphere, and specialized materials) are integrated into the eldercare setting. The environment is structured to support the individual by placing needed memory, visual, auditory, tactile, and olfactory cues in the environment. For example, high-contrast signs can be used to compensate for memory deficits and to encourage engagement with the environment. A sign saying, “Please water the flowers,” might be placed next to potted plants and a watering can.

The Montessori approach encourages individuals with dementia to continue to care for themselves as independently as possible and provides opportunities and supports to care for others (e.g., reading to another individual with vision impairment).

Simulated Presence Therapy (SimPres)

Simulated presence therapy (SIMPLES) is an emotion-oriented approach aimed at reducing levels of anxiety and challenging behaviors by playing audio voice recordings of the individual’s close relatives. SIMPLES have 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).

Spaced Retrieval (SR)

Spaced Retrieval (SR) is a technique for learning and storing information so that it can be easily accessed. SR teaches new memory associations using the principles of classical conditioning and taking advantage of preserved implicit (unconscious or automatic) memory. For example, a lead question prompts a previously relevant response—a new, functional association between the question and the response is established using systematic spaced practice (i.e., practice over increasingly longer intervals of time) and the principles of errorless learning (Benigas, Brush, & Elliot, 2016; Brush & Camp, 1998). Errorless learning is a strategy that eliminates errors as much as possible by providing prompts and cues immediately following instructions.

Validation Therapy

Validation therapy is an approach that involves validating or accepting the values, beliefs, and reality of the person with dementia to help reduce stress, provide opportunities for the individual to communicate feelings, promote contentment, and lessen negative behaviors. Using validation therapy, the clinician tries to communicate with the individual by acknowledging the feelings that underlie their behavior and confused speech (Feil, 1982; Hitch, 1994; Mitchell, 1987; Neal & Briggs, 2003).

Eating and Swallowing Interventions

Individuals progressing through the stages of dementia may experience increasing difficulties surrounding mealtime, including behavioral challenges (e.g., forgetting to eat, wandering); eating problems (difficulty using utensils or self-feeding); and swallowing disorders (dysphagia; Aselage, 2010; Watson & Green, 2006). For example, individuals with moderately severe cognitive decline may have difficulty manipulating a knife; individuals with severe cognitive decline may have difficulty 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).

These problems can have an impact on the health of an individual. Treatment decisions should take into consideration the potential health risks associated with eating and swallowing problems, along with the individual’s dignity and quality of life throughout the disease (Hickey, Cleary, Coulter, & Bourgeois, 2018).

Depending on the needs of the individual, goals may focus on one or more of the following:

• Improving the ability to eat and swallow safely
• Increasing intake to improve nutrition and hydration
• Encouraging engagement and participation in the mealtime experience (Hickey, Cleary, Coulter, & Bourgeois, 2018).

Goal selection is person-centered. It considers the wishes of the individual with dementia and their family (e.g., cultural food choices, family rituals at mealtime, and religious beliefs) and involves input from an interdisciplinary team of professionals (e.g., Beckley, 2017).

Interventions may include the following:

• Environmental modifications such as
  • home-like or naturalistic settings (Aselage & Amella, 2010; Brush, Meehan, & Calkins, 2002; Brush et al., 2011);
  • adaptive seating to improve posture (Liu et al., 2016);
  • verbal prompts and cues to increase food intake (Aselage, Amella, & Watson, 2011; Liu et al., 2016); and
  • increased lighting and decreased visual and auditory distractions (see, e.g., Behrman, Chouliaras, & Ebmeier, 2014; Calkins & Brush, 2003).
• Diet modifications such as
  • altering the texture, temperature, or taste of foods to facilitate safety and ease of swallowing and to improve intake (see, e.g., Douglas & Lawrence, 2015; Keller, Chambers, Niezgoda, & Duizer, 2012; Yen, 1996) and
  • including high-energy, nutrition-rich foods to ensure adequate nourishment (see, e.g., Spindler, 2002).

Other interventions include strategies to maximize independence and safety (e.g., shopping lists, weekly meal planners, and written cues to sequence mealtime activities or to identify steps for using safe-swallow strategies).

For a comprehensive discussion of eating and swallowing interventions for individuals with dementia, see Hickey, Cleary, Coulter, & Bourgeois, 2018.

Tube Feeding

Tube feeding for supplemental or alternative intake is sometimes considered for a short or extended period for individuals with late-stage dementia. The decision to implement tube feeding is complicated. It should take into account the potential complications of tube feeding and the individual’s quality of life.

Decisions about tube feeding should consider input from the team and should reflect the wishes of the individual and his or her family. Ideally, a discussion about the potential use of tube feeding in the later stages of dementia should take place when the individual is cognitively able to communicate his or her wishes about end-of-life options (see, e.g., American Geriatrics Society [AGS], 2014, and Hickey, Cleary, Coulter, & Bourgeois, 2018, for further discussion).

Treatment For Hearing Loss

The presence of dementia should not preclude fitting with a hearing aid; however, ongoing support may be necessary to ensure regular hearing aid use (Lewsen & Cashman, 1997). Responsive behaviors (e.g., repeating questions, making negative statements, forgetting, demonstrating restlessness, pacing, and “hearing things”) may be improved with the use of amplification (Palmer, Adams, Bourgeois, 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 the 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 hearing aids, audiologists may also recommend various inexpensive, low-risk HATS options (e.g., low-cost one-on-one amplification devices, devices to make phones louder, and closed-caption TV) for improving communication.

Audiologists also 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.

End-of-Life Issues

The pattern of functional decline in individuals at the end of life varies. For individuals with dementia, the decline may be inconsistent over a long period. SLPs need to understand the process of dying to understand the emotional and psychological issues facing the individual and their family members.

The goal of intervention with individuals who are nearing the end of life is facilitative or palliative rather than rehabilitative. The expected outcome of an intervention is not necessarily to improve abilities but to help the individual maintain dignity and quality of life.

Cognitive decline may be significant at this stage of dementia, making it difficult for the individual to make decisions about their care or to communicate their wishes (Livingston et al., 2017). The SLP’s role is essential in helping the individual communicate their preferences about how they would like to receive care and how they want to spend their time.

Early on and throughout dementia, SLPs can discuss and document the individual’s wishes and help develop strategies that allow the individual to express wants and needs more effectively. They can also help the individual communicate last wishes to the family and possibly resolve long-standing issues (e.g., making peace with family members or asking for forgiveness).

The wishes of the individual and his or her 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 is best clinically may not always be best for the individual’s quality of life. JCAHO’s 2004–2005 Ethics, Rights, and Responsibilities Standards address this issue in Standard RI.2.80 (JCAHO, 2004).

Cultural Considerations

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. healthcare system; however, they 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.

Service Delivery

In addition to determining the optimal, person-centered dementia treatment, audiologists and SLPs consider other service delivery variables—including format, provider, dosage, timing, and setting—that may affect treatment outcomes.

• Format: The structure of the treatment session (e.g., group, individual, consultation with the family).
• Provider: The person providing the treatment (e.g., SLP, trained volunteer, caregiver).
• Dosage: The frequency, intensity, and duration of service.
• Timing: The timing of intervention relative to the onset of dementia.
• Setting: The location of treatment (e.g., home, assisted living facility, nursing facility, community-based setting).

Group treatment can be used as a format to apply learned strategies and to practice communication in natural conversational contexts.

Technology can be incorporated into the delivery of services for dementia, including computer-based treatment programs and the use of telepractice as a format for delivering face-to-face services remotely. See ASHA’s Practice Portal page on Telepractice.

Treatment extenders such as family members, volunteers, and community members can be trained to encourage the use of communication strategies that were learned in structured treatment sessions. In this way, treatment extenders provide practice in the home and the community.