CLINICAL TOPICS

Dementia

Overview

Incidence and Prevalence

Signs and Symptoms

Causes

Roles and Responsibilities

Assessment

Treatment

Treatment for the cognitive-communication deficits associated with dementia addresses the specific needs of the individual, taking into consideration the stage of the illness. Most common dementia-associated diseases are progressive in nature, and speech-language pathologists (SLPs) have an ethical responsibility to provide appropriate services that will benefit the individual and maximize cognitive-communication functioning at all stages of the disease process. Interventions that enhance activity and participation through modification of contextual factors may be warranted even if the prognosis for improved body structure/function is limited.

SLPs consider the individual's age, education, premorbid information, social history, present social context, cultural and linguistic background, and vocational status (current or premorbid) in formulating realistic and functional treatment goals within the bounds of the cognitive-communication disorder and with consideration for the progressive nature of the disease. Goals are often set based on the individual's current level of functioning, which can be determined using standardized functional rating scales.

Decisions about goals and treatment options are made in collaboration with clients, families/caregivers, and other health professionals. Clinicians can work directly with the individual who has dementia or indirectly through environment modifications, caregiver training, or the development of therapeutic routines and activities.

Treatment also involves providing information and guidance to the individual, family/caregiver(s), and other significant persons about the nature of the disorder and the course of treatment. Treatment occurs in the language(s) used by the person with dementia either by a bilingual SLP or with the use of trained interpreters, when necessary. See bilingual service delivery.

Demographic shifts and immigration patterns have led to increased diversity among the elderly population and their caregivers in the United States. Cultural influences and familial expectations regarding roles may impact long-term care decisions, who makes these decisions, and the value of treatment and intervention (Hinton, Fox, & Levkoff, 1999; Low et al., 2009; Parker, Young, & Rogers, 2010; Whitlatch & Feinburg, 2003; Williams & Harvey, 2013; Winslow & Flaskerud, 2009). See cultural competence.

Although SLPs are autonomous professionals, successful intervention with individuals with cognitive-communication disorders often requires the collaborative involvement of other professionals. SLPs work collaboratively with neuropsychologists and other professional colleagues (e.g., audiologists), families, employers, and others who provide support to individuals with cognitive-communication disorders. SLPs (working within their scope of practice and at their individual level of competence) are uniquely qualified to treat communication disorders associated with cognitive impairments.

Consistent with the World Health Organization (WHO) framework, intervention is designed to

  • capitalize on strengths and address weaknesses related to underlying structures and functions that affect communication,
  • facilitate the individual's activities and participation by assisting the person to acquire new skills and strategies,
  • modify contextual factors that serve as barriers and enhance facilitators of successful communication and participation, including development and use of appropriate accommodations.

Because of the progressive nature of most dementia-associated illnesses, clinicians must determine whether individuals with dementia have the potential to benefit from cognitive-communication interventions. Positive prognostic factors are identified that demonstrate the feasibility of the proposed intervention.

Depending on assessment results, intervention addresses

  • processing of various types of information under ideal conditions and in the context of various activities and settings;
  • executive or self-regulatory skills (e.g., setting goals, planning, initiating and inhibiting, self-monitoring and self-evaluating, problem solving, thinking and acting strategically);
  • use of effective compensatory behaviors and communication techniques and strategies;
  • audiology services as needed for identified hearing loss (e.g. hearing aids, hearing assistive technology);
  • cognitive and communication demands of relevant social, academic, and/or vocational tasks to facilitate performance of those tasks;
  • communication and support competencies of relevant people in the environment (e.g., families/caregivers).

Caregivers and Communication Partners

Those who provide care to individuals with dementia, including both professionals and family members, are faced with a number of challenges that can ultimately affect their own health and wellbeing (Schulz & Beach, 1999; Shaw et al., 1997). The changes in communication functioning brought about by cognitive decline can significantly affect day-to-day communication, resulting in considerable frustration. Research focused on individuals with AD suggests that training caregivers about dementia and teaching them to use strategies to enhance communication effectiveness may contribute to increased caregiver understanding of communication breakdowns; more successful conversational exchanges; and improved quality of life for the individual with dementia (Zientz, Rackley, Chapman, Hopper, & Mahendra, 2007).

Evidence Highlight

  • Evidence indicates that communication skills training with caregivers and health professionals may improve the quality of life and well-being of people with dementia in nursing home and home-care settings. More specifically, training improved positive behavior and satisfying interactions (Eggenberger, Heimerl, & Bennett, 2013).

Expert Opinion

  • Clinicians should focus on caregiver education and counseling to establish communication expectations and strategies (Taylor-Goh, 2005).

See the Service Delivery: Provider section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

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 both general and specific treatments for persons with cognitive-communication disorders associated with dementia. Some treatment approaches are considered compensatory, and some are considered restorative in nature. Compensatory treatment approaches focus on teaching methods and skills to compensate for or overcome deficits that are not amenable to retraining. Restorative treatments involve direct therapy aimed at improving or restoring impaired function(s) through retraining. Where available, links to evidence and expert opinion regarding the intervention are provided. This list is not exhaustive nor does inclusion of any specific treatment approach imply endorsement by ASHA.

Evidence Highlights

  • Evidence indicates that compensatory techniques may be less effective than restorative strategies for improving cognition and functional abilities in individuals with Alzheimer's disease (Sitzer, Twamley, & Jeste, 2006).

There is mixed evidence regarding the use of cognitive-focused interventions with individuals with dementia:

  • Evidence from several reviews indicates that cognition-focused interventions have demonstrated effects on trained cognitive skills (Kurz, Leucht, & Lautenschlager, 2011; Sitzer et al., 2006), functional abilities (Sitzer et al., 2006), and performance-based activities of daily living (Sitzer et al., 2006) and that outcomes may be maintained for an average of 4.5 months ( Sitzer et al., 2006).
  • Evidence from another review indicates that specific cognitive intervention strategies may be beneficial for individuals with mild to moderate dementia in terms of learning facts and procedures; however, generalization and long-term maintenance may be limited, and improvement in overall cognitive functioning generally should not be expected (Hopper et al., 2013).
  • Finally, Bahar-Fuchs, Clare, and Woods (2013) concluded that there was insufficient evidence to support the efficacy of cognitive training for individuals with mild to moderate Alzheimer's disease and vascular dementia; however, noted that some gains in treatment may not be adequately captured by available standardized outcome measures.  The authors also suggested that there may be preliminary support for the use of contextualized individual cognitive rehabilitation for improving self-rated competence and satisfaction with activities of daily living.

See the Compensatory Treatments and Restorative Treatments  General Findings sections of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Assistive Technology (including hearing assistive technology)

Assistive technology (AT) is a generic term that includes assistive, adaptive, and rehabilitative devices and services for individuals with disabilities. An assistive technology device is any item, piece of equipment, or system—whether commercial, modified, or customized—that is used to increase, maintain, or improve the functional capabilities of a person with disabilities. Hearing Assistive Technology Systems (HATS) are available for individuals who currently use hearing technology, such as hearing aids and cochlear implants. HATS are also available for those with hearing loss that is untreated. Personal amplifiers and FM systems and other technology can enhance face-to-face communication. There are several commercially available and emerging assistive technologies that, with further interdisciplinary research and modifications, may have potential applications to dementia care (Bharucha et al., 2009).

Evidence Highlight

  • Evidence indicates that technology-based interventions (e.g., in-home technology support systems, computer-based programs, electronic memory aids, video monitoring and conferencing) offer future promise to increase safety in the home and reduce caregiver burden and total care costs for individuals with early-stage Alzheimer's disease (Buettner, Yu, & Burgener, 2010).

Expert Opinion

  • External assistive technology, such as a portable voice organizer or mobile phone, can be considered effective for adults with severe memory impairment as a result of neurodegenerative diseases, such as Alzheimer's disease (Piras, Borella, Incoccia, & Carlesimo, 2011).

See the Compensatory Treatments: Assistive Technology section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Cognitive Stimulation Therapy

Cognitive stimulation therapy (CST) focuses on actively stimulating and engaging individuals with dementia by using theme-based activities in an optimal learning environment (typically, in a small-group setting).

Evidence Highlight

  • Evidence indicates that cognitive stimulation improves (Aguirre, Woods, Spector, & Orrell, 2013; Woods, Aguirre, Spector, & Orrell, 2012) or maintains (Yuill & Hollis, 2011) cognitive function in individuals with dementia.
  • Evidence is mixed regarding the potential benefit of cognitive stimulation on outcomes of quality of life and well-being. One systematic review indicated that cognitive stimulation improves self-reported quality of life and well-being (Aguirre et al., 2013); one indicated that findings were "promising" for these outcomes ( Woods et al., 2012, p. 2); and one systematic review suggested that there was insufficient evidence to conclude that group or individual cognitive stimulation therapy improves self-rated quality of life for individuals with dementia (Cooper et al., 2012).

See the Treatment: Cognitive Stimulation section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Environmental Modifications

Environmental modifications are changes or adaptations to the environment to improve communication skills in individuals with dementia. Modifications are aimed at optimizing the cognitive, visual, and auditory aspects of the environment and include improving lighting, reducing glare, and reducing visual clutter; minimizing background noise and noise reverberation; and providing cues (e.g., signs that incorporate text and simple graphics) and displaying personal items to improve memory, awareness, and orientation (Brush, Sanford, Fleder, Bruce, & Calkins, 2011).

External Memory Aids

External memory aids are aimed at helping individuals with memory problems in their day-to-day activities. They include electronic and non-electronic devices, as well as environmental adjustments. Examples include personal digital assistants (PDAs), message boards, clocks, and pictures.

Evidence Highlights

  • Evidence indicates that verbal instruction provided by way of an electronic memory aid may improve learning outcomes associated with activities of daily living for individuals with mild to moderate dementia (Hopper et al., 2013).
  • Additionally, evidence indicates that a combination of memory aids and caregiver training may improve verbal communication between individuals with Alzheimer's disease and their caregivers (Egan, Bérubé, Racine, Leonard, & Rochon, 2010).

Expert Opinion

  • Clinicians should consider using clocks, calendars, family pictures, and other orienting stimuli to reduce cognitive decline in individuals with dementia (Maslow, Selstad, & Denman, 2002).

See the Treatments: Memory Training Programs of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Memory-Training Programs

Memory-training programs focus on improving/re-training memory skills using techniques such as spaced retrieval, errorless learning, procedural memory stimulation, vanishing cues, and didactic approaches.

Evidence Highlights

  • There is mixed evidence regarding the use of memory re-training programs. Evidence from one guideline (Piras et al., 2011) indicates that, overall, memory re-training programs are not effective for patients with severe or mild memory impairments secondary to vascular or Alzheimer's dementia; however, the guideline does recommend the errorless learning approach as a domain-specific learning strategy. A systematic review conducted by Hopper et al. (2013) similarly concluded that all participants with dementia learned facts and procedures using errorless learning; however, "learning under [errorless learning] conditions was not always superior to learning under errorful/trial-and-error conditions" (p. 141). Findings from the Hopper et al. review also indicate that spaced retrieval was associated with improved recall of facts and performance of tasks by individuals with varying levels of dementia severity.

Expert Opinion

  • Expert opinion regarding memory training programs is also mixed. The Italian Association of Psychogeriatrics (Caltagirone et al., 2005) suggests that, although some patients may derive benefit, "generally, there is only limited evidence that memory training, not associated with other techniques that involve cognitive and functional training, is effective for improving cognitive function in AD patients" (p. 11). Maslow et al. (2002) recommend that, to reduce cognitive decline, memory training should be considered only in the early stages of dementia.

See the Treatments: Memory Training section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Montessori-Based Treatment

Montessori-based treatments use principles developed by Maria Montessori (2008), including using real-life materials, designing activities that are of interest to the individual, allowing learning to progress in sequence, minimizing the risk of failure and maximizing the chance of success, and breaking down activities into component parts and practicing these one at a time.

Reality Orientation (RO)

Reality Orientation (RO) is a technique to reduce confusion and improve quality of life for individuals with dementia by providing orienting information (e.g., time, place, or person) to reinforce understanding and awareness of the environment. Information is repeated at regular intervals throughout the day.

Evidence Highlight

  • Evidence has shown reality orientation to be effective in improving cognitive ability, as measured by the Mini-Mental State Examination, and that these improvements were generally maintained at follow-up (Bates, Boote, & Beverley, 2004).

Expert Opinion

  • There are mixed opinions regarding the use of reality orientation therapy. The Work Group on Alzheimer's Disease and Other Dementias (Rabins et al., 2007) concluded that cognition-oriented treatments, including reality orientation, "are unlikely to have a persistent benefit and have been associated with frustration in some patients" (p. 12). The Italian Association of Psychogeriatrics ( Caltagirone et al., 2005) suggests that reality orientation should be considered in all patients as a practice standard.

See the Treatments: Reality Orientation section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Reminiscence Therapy (RT)

Reminiscence Therapy (RT) is an intervention approach that uses the life history and experience of an individual to improve his or her sense of well-being. RT programs typically involve the discussion of past activities, events, and experiences—using tangible prompts, such as photographs, familiar items, and music from the past. The customized nature and individual focus of reminiscence therapy make it an intervention particularly well suited for individuals from diverse backgrounds (Harris, 1997).

Evidence Highlight

  • Evidence indicates that individual reminiscence therapy-specifically including the components of (a) a life review process, (b) specific memory triggers, and (c) the production of a life story book-has been associated with psychosocial benefits for individuals with dementia. Evidence does not support a more general form of individual reminiscence therapy (Subramaniam & Woods, 2012).

See the Treatments: Reminescence Therapy of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Simulated Presence Therapy (SimPres)

Simulated presence therapy (SIMPRES) is an emotion-oriented approach aimed at reducing levels of anxiety and challenging behaviors by playing audio recordings of the voices of close relatives of the individual. SIMPRES has been used to improve well-being (e.g., decrease agitation and withdrawal behaviors) in individuals with Alzheimer's disease who have adequate hearing and have retained communication skills (Bayles et al., 2006).

Validation Therapy

Validation therapy is an approach that involves validating or accepting the values, beliefs, and reality of the person with dementia to help reduce stress and provide opportunities for the individual to communicate his or her feelings; validation therapy was developed by Naomi Feil (1982) for individuals with cognitive impairment and dementia.

Expert Opinion

  • The Italian Association of Psychogeriatrics (Caltagirone et al., 2005) suggests as a practice option that validation therapy be used for research purposes only.

See the Treatments: Validation Therapy section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Feeding and Swallowing Treatment

Individuals progressing through different stages of dementia may demonstrate difficulty feeding and swallowing. For example, individuals with moderately severe cognitive decline often demonstrate difficulty using a knife; individuals with severe cognitive decline may demonstrate difficulties discriminating between utensils; and individuals with very severe cognitive decline may be easily overwhelmed and require cues to locate food on the plate and to swallow (Voyzey, 2010). Swallowing function may also be affected by reduced muscle strength and coordination. Once appropriate feeding and swallowing strategies, postures, and consistencies have been identified, the clinician can train caregivers to provide feeding support and cuing as appropriate.

Diet Modifications

Diet modifications consist of altering the viscosity, texture, temperature, or taste of a food or liquid to facilitate safety and ease of swallowing. Typical modifications may include thickening liquids (e.g., water, coffee, juice) or softening, chopping, or pureeing solid foods. Taste or temperature of a food may be altered to provide additional sensory input for swallowing, and preferences of the individual are considered to the extent feasible. The nutritional needs of the individual and the safety of medical treatments (e.g., swallowing vitamin supplements or drinking thin liquids) are also considered before making modifications. A referral to a dietician is made as necessary.

Expert Opinion

  • The Alzheimer's Association (Tilly & Reed, 2007) suggests that dysphagia can be managed through the use of hands-on assistance with eating, modifying food texture, or increasing the thickness of foods. Dietary restrictions may need to be modified if individuals are not eating enough to maintain their weight.

See the Treatment: Swallowing section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Postural Changes

Positioning techniques involve adjusting an individual's posture or position during feeding. These techniques aim to protect the airway and offer safe transit of food and liquid. No single posture will provide improvement to all patients/clients; rather, the general goal is to establish central alignment and stability for safe feeding.

Evidence Highlight

See the Treatment: Postural Changes section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Tube Feeding

Tube feeding includes supplemental or alternative avenues of intake (e.g., nasogastric tube [NG], transpyloric tube placed in the duodenum or jejunum, or gastrostomy-G-tube placed into the stomach or GJ-tube placed into the jejunum). These approaches may be used if the individual's swallowing safety and efficiency cannot reach a level of adequate function or does not support nutrition and hydration adequately. In these instances, the swallowing and feeding team considers whether the individual will need the supplemental or alternative source for a short or extended period of time to determine the optimum tube feeding selection to best meet the individual's needs. Alternative feeding does not preclude the need for feeding-related treatment.

Evidence Highlight

Expert Opinion

  • The European Society for Clinical Nutrition and Metabolism (ESPEN) guidelines (Volkert et al., 2006) suggest that oral nutritional supplements, and occasionally also tube feeding, should be considered to ensure appropriate nutrition for individuals with early and moderate dementia.
  • Several guidelines indicate that tube feeding is not recommended for individuals with terminal (Volkert et al., 2006) or severe (NICE, 2006) dementia. NICE (2006) also stresses that ethical and legal principles must be applied when making decisions about withholding nutritional support.
  • The NICE (2006) guidelines recommend that individuals with dementia eat and drink by mouth as long as possible and that tube feeding or other forms of nutritional support be considered if the dysphagia is thought to be a transient condition.
  • The Italian Association of Psychogeriatrics (Caltagirone et al., 2005) indicates that percutaneous endoscopic gastrostomy (PEG) should be considered only for patients who are likely to benefit from its use-for example, individuals at risk for, or in initial stages of, a reversible malnutrition.

See the Treatment: Tube Feeding section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Treatment For Hearing Loss

The presence of dementia should not preclude fitting with a hearing aid; however, ongoing support may be necessary to ensure compliance with hearing aid use (Lewsen & Cashman, 1997). Although there is no current evidence that hearing aids can improve cognition in persons with dementia, problem behaviors (e.g., repeating questions, negative statements, forgetting, restlessness, pacing, "hearing things") can be improved with the use of amplification (Palmer, Adams, Bourgeouis, Durrant, & Rossi, 1999). In addition, elderly patients fitted with hearing aids during the early stages of hearing loss may retain cognitive function better than those who postpone fitting of hearing aids (Obuchi, Harashima, & Shiroma, 2011).

Given the relationship between hearing loss and dementia and the co-occurrence of hearing loss and dementia in aging adults, audiologists play a significant role in the treatment of these individuals. In addition to assessing the need for HATS, hearing aids, and cochlear implants, audiologists educate family members and caregivers on strategies to improve communication at home (e.g., improving listening environments) and provide ongoing counseling and support in the use of technology.

End-of-Life Issues

Speech-language pathologists (SLPs) working with individuals with dementia may be presented with a patient nearing the end of life. These patients introduce complex clinical and ethical issues around feeding and communication that impact the role of the SLP and other health care professionals.

The goal of intervention with patients at this stage is not rehabilitative, but facilitative or palliative. The SLP may be asked to participate in team decision making regarding the use of alternative nutrition, such as tube feeding (Landes, 1999), and may develop an alternative communication strategy, if appropriate, that will allow the individual to express his or her wants and needs more effectively. The expected outcome of intervention is not necessarily to improve abilities, but to allow the individual to use the abilities he or she still possesses to interact with family and friends and/or enjoy favorite foods, if that is the patient's wish.

The pattern of functional decline in individuals at the end of life varies, depending on a person's diagnosis. In dementia, the decline may be inconsistent over a long period of time. SLPs need to understand the process of dying to understand the emotional and psychological issues faced by their patients and patients' family members. The wishes of the patient and family are paramount when considering end-of-life issues, and the role of the SLP extends only as far as the patient or family wishes. What the SLP may think is best for the patient clinically may not always be accepted as best for the patient's quality of life. The document, 2004-2005 Ethics, Rights, and Responsibilities Standards of the Joint Commission on Accreditation of Healthcare Organizations, addresses this issue in Standard RI.2.80.

Views of the natural aging process and acceptance of disability vary by culture. Cultural views and preferences may not be consistent with medical approaches typically used in the U.S. health care system, but must be recognized and respected. The clinician approaches clinical interactions with cultural humility and demonstrates sensitivity to social and cultural influences when sharing potential treatment recommendations and outcomes. See end-of-life issues in speech-language pathology (ASHA, n.d.).

Expert Opinion

  • The Alzheimer's Association (Tilly & Reed, 2006) indicates that, for individuals nearing the end of life, artificial nutrition and hydration may be withheld in accordance with the patient's or family's wishes. These individuals require good oral care, and their mouths should be kept moistened.

See the Treatment: Swallowing section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Service Delivery

In addition to determining the type of treatment that is optimal for the person with dementia, the clinician considers other service delivery variables that may have an impact on treatment outcomes, such as

  • Dosage-the frequency, intensity, and duration of service
  • Timing-the timing of rehabilitation relative to the onset of dementia
  • Format-whether a person is seen for treatment (e.g., individual, group, or in consultation with the family/caregivers)
  • Provider-the person providing treatment (e.g., SLP, trained volunteer, caregiver)
  • Setting-the location of treatment (e.g., home, nursing facility, community-based setting)

See the Service Delivery section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Evidence Highlight

  • Greater effects have been observed for studies using individual cognitive treatment modalities over studies using group modalities (Sitzer et al., 2006).

See the Service Delivery: Format section of the dementia evidence map for pertinent scientific evidence, expert opinion, and client/caregiver perspective.

Resources

References

Content Disclaimer: The Practice Resource Project, ASHA policy documents, and guidelines contain information for use in all settings; however, members must consider all applicable local, state and federal requirements when applying the information in their specific work setting.