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
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:
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.
See ASHA's resource on common dementias.
Other conditions that may result in dementia due to progressive changes in brain function include
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).
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). See section in this Portal page on modifiable risk factors.
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, mild neurocognitive disorder (mild NCD), as defined in the DSM-5 (APA, 2013). The clinical criteria for diagnosing mild NCD are
See ASHA's Mild Cognitive Impairment Evidence Map for summaries of the available evidence on this topic.
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 time period. Prevalence refers to the number of people who are living with the disorder in a given time period.
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).
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 dementias (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.
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 a 12-year period—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 the 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).
See ASHA's resource on common dementias.
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.
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 the environment, and focus on a different activity).
See Behaviors: How To Respond When Dementia Causes Unpredictable Behaviors [PDF] from the Alzheimer's Association for more information.
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 conversation.
With more significant cognitive decline,
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.
A number of risk factors have been associated with dementia. Some are modifiable, and others are nonmodifiable.
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)
Middle life (45–65 years)
Later life (> 65 years)
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 summary.
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 inheritance of the Apolipoprotein E (ApoE) gene (e.g., Green et al., 2002; Lovestone, 1999) or to unexplained hereditary causes (Wolters et al., 2017).
The concept of 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 is applicable 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 are 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 prior to 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 are those with less CR (Stern, 2012).
Lifestyle factors such as higher education, physical activity, intellectual stimulation, and social involvement are associated with lower risk of dementia. These factors are thought to increase reserve, which in turn increases 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  for a review). In studies comparing bilingual and monolingual individuals, bilinguals demonstrated 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).
Overall, 15% of the adult population in the United States age 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 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:
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).
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, 2016b).
Appropriate roles for SLPs include the following:
As indicated in the Code of Ethics (ASHA, 2016a), 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 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—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 information and on how professionals with complementary knowledge and skills can affect functional outcomes for individuals. (See ASHA's resources on IPE/IPP and person- and family-centered care.)
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. See ASHA's Scope of Practice in Audiology (ASHA, 2018).
Appropriate roles for audiologists include the following:
As indicated in the Code of Ethics (ASHA, 2016a), 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 in nature, 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. See ASHA's Practice Portal pages on Cultural Competence and Bilingual Service Delivery.
SLPs often conduct assessments in collaboration with clinical neuropsychologists. See ASHA's resources on collaboration and teaming as well as evaluating and treating communication and cognitive disorders – approaches to referral and collaboration for speech-language pathology and clinical neuropsychology.
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 other member of the interdisciplinary care team working with the individual. See Scope of Practice in Audiology (ASHA, 2018) and Scope of Practice in Speech-Language Pathology (ASHA, 2016b).
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.
Prior to 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 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 prior to cognitive-communication screening. See Scope of Practice in Speech-Language Pathology (ASHA, 2016b) and ASHA's Practice Portal page on Adult Hearing 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. See ASHA's Practice Portal pages on Hearing Loss - Beyond Early Childhood and Hearing Aids for Adults.
If the individual fails the hearing screening, a referral is made to an audiologist for a comprehensive audiologic assessment.
If visual deficits are suspected, the individual is referred for vision testing prior to 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 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—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.
A comprehensive assessment includes an assessment of language and communication. It may also include an assessment of swallowing and a complete audiologic assessment.
Consistent with the World Health Organization's (WHO's) International Classification of Functioning, Disability and Health (ICF) framework (ASHA, 2016a; WHO, 2001), comprehensive assessment is conducted to identify and describe
See ASHA's Person-Centered Focus on Function: Dementia [PDF] for an example of assessment data consistent with ICF.
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.
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). See ASHA's resource on person- and family-centered care.
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. See ASHA's resource on assessment tools, techniques, and data sources.
A number of 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.
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 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).
See the Assessment section of ASHA's Practice Portal page on Adult Dysphagia for more information.
See ASHA's Practice Portal page on Permanent Childhood Hearing Loss for information about full audiologic assessment conducted by an audiologist.
The comprehensive assessment may result in
The Omnibus Budget Reconciliation Act (1987) mandates 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 in nature, and goals will change over the course of 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. See ASHA's resources on IPE/IPP and person- and family-centered care. At the beginning and throughout the course of treatment, SLPs share information about dementia with the individual and their family/caregivers and provide family counseling and caregiver training.
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. It is imperative that SLPs ask the individual about his or her wishes for continued care over time, including feeding and swallowing directives. See ASHA's resource on person- and family-centered care.
Consistent with the WHO (2001) framework, person-centered intervention is designed to
Person-centered communication goals can focus on
See ASHA's Person-Centered Focus on Function: Dementia [PDF] for an example of goals consistent with ICF.
Audiology services (e.g., hearing aids, hearing assistive technology) may be indicated for individuals with hearing loss.
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. See ASHA's Practice Portal page on Bilingual Service Delivery.
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 on the basis of 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).
See ASHA's Practice Portal page on Cultural Competence.
Family members and those who care for individuals with dementia are faced with challenges that can affect their own 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 the individual 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 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 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 inclusion of any specific treatment approach does not imply endorsement by ASHA.
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 to 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. See ASHA's resource on hearing assistive technology. HATS may be appropriate for individuals with dementia who have hearing loss.
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 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 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:
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 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 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 the course of 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 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) 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. 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).
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 instruction.
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).
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. Decisions regarding treatment 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 course of the disease (Hickey, Cleary, Coulter, & Bourgeois, 2018).
Depending on the needs of the individual, goals may focus on one or more of the following:
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). See ASHA's resources on person- and family-centered care and IPE/IPP. See also ASHA's Practice Portal page on Adult Dysphagia.
Interventions may include the following:
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 for supplemental or alternative intake is sometimes considered for a short or extended period of time 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 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).
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.
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 of time. 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 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 the course of the 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).
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; 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.
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 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.
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 in the community.
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Content for ASHA's Practice Portal is developed through a comprehensive process that includes multiple rounds of subject matter expert input and review. ASHA extends its gratitude to the following subject matter experts who were involved in the development of the Dementia page.
In addition, ASHA thanks the members of the Ad Hoc Committee on Dementia whose work was foundational to the development of this content. Members of the committee included Kathryn Bayles, Michelle Bourgeois, Tammy Hopper, Danielle Ripich (chair), Susan Rowe, and Amy Hasselkus (ex officio). Celia Hooper, ASHA vice president for professional practices in speech-language pathology (2003-2005), served as monitoring vice president.
The recommended citation for this Practice Portal page is:
American Speech-Language-Hearing Association (n.d.). Dementia (Practice Portal). Retrieved month, day, year, from www.asha.org/Practice-Portal/Clinical-Topics/Dementia/.