Dementia is a syndrome caused by a number of progressive disorders that affect memory, thinking, behavior, and the ability to perform activities of daily living (World Alzheimer Report, 2010).
Alzheimer’s disease (AD) and other dementias currently affect more than 5 million Americans (Fargo and Bleiler 2014) and 747 thousand Canadians (Alzheimer Society of Canada, 2012), and the incidence is expected to exceed 7.1 million by 2025 (Fargo and Bleiler 2014).
Dysphagia and behavioral eating deficits are common in Alzheimer’s disease and other dementias (Feinberg, Ekberg et al. 1992, Horner, Alberts et al. 1994, Priefer and Robbins 1997, Wada, Nakajoh et al. 2001, Garon, Sierzant et al. 2009, Suh, Kim et al. 2009, Humbert, McLaren et al. 2010, Affoo, Foley et al. 2013), and speech-language pathologists have an opportunity to play a role in dysphagia care for these individuals at any stage in the disease process.
Individuals with mild dementia may experience early taste (Murphy 1999), smell (Nordin, Murphy et al. 1996), and swallowing dysfunction (Humbert, McLaren et al. 2010), which may result in decreased oral intake and weight loss.
Dysphagia may be quite common in individuals with moderate dementia—the prevalence of dysphagia in moderate-to-severe Alzheimer’s disease has been estimated between 84% to 93% (Affoo, Foley et al. 2013). Individuals with moderate dementia may experience dysphagia characterized by oral deficits including prolonged bolus preparation, prolonged oral transit times, and pharyngeal deficits, including delayed initiation of the pharyngeal swallow, reduced hyo-laryngeal excursion, laryngeal penetration, tracheal aspiration, and pharyngeal residue post swallow (Feinberg, Ekberg et al. 1992, Horner, Alberts et al. 1994, Priefer and Robbins 1997, Wada, Nakajoh et al. 2001, Garon, Sierzant et al. 2009, Suh, Kim et al. 2009, Humbert, McLaren et al. 2010, Affoo, Foley et al. 2013). These individuals may also develop food agnosia, perceptual and spatial deficits resulting in difficulties recognizing food and utensils (Logemann 1998), and apraxia resulting in difficulty performing voluntary actions such as opening the mouth to a spoon or moving food from the front to the back of the mouth (Benke 1993).
The prevalence of eating and swallowing deficits increases in individuals with severe or advanced dementia. In a study of 323 nursing home residents with advanced dementia observed for a period of 18 months, 86% were observed to have eating problems, including swallowing or chewing problems, refusal to eat or drink, suspected dehydration, and persistently reduced oral intake (Mitchell, Teno et al. 2009).
The Role of the Speech-Language Pathologist
The speech-language pathologist (SLP) plays an important role in the assessment, treatment, and management of dysphagia in individuals with dementia. Rather than providing a review of the roles of the SLP in general dysphagia care, the purpose of this review is to present an evidence-based summary of specific features related to eating and swallowing in individuals with dementia and to inform current SLP practice.
Oral Health in Subjects with Dementia
There is evidence to suggest that individuals with AD, even in the early stages of the disease, experience reduced submandibular/sublingual salivary flow rates compared to age-matched controls (Ship, DeCarli et al. 1990) and reduced salivary flow rates correlated with diminished oral health (Ship and Puckett 1994). Dry mouth results in inefficient food bolus formation and transport, demineralization of dentition, mucosal ulceration, altered oral flora, dysphonia, impaired taste and smell while eating, and discomfort (Baum 1989).
An important goal of dysphagia assessment for individuals with dementia is to identify any potentially reversible causes for the dysphagia (American Geriatrics Society Ethics, Clinical et al. 2014). Identification of reduced salivary flow, dry oral mucosa, and poor oral health during an oral exam are potentially manageable conditions whose treatment/management may result in improved oral stage efficiency during eating and swallowing and decreased bacterial colonization in the oral cavity.
Mastication and Cognition
A causal relationship exists between mastication and cognition (Weijenberg, Scherder et al. 2011), and the nature of this relationship suggests that the prevention of loss of masticatory function and the treatment of oral impairments may stabilize or even improve cognition (Weijenberg, Scherder et al. 2011). As a result, it is vital that cognitively impaired individuals requiring diet texture softening due to potentially reversible causes of dysphagia are reassessed in a timely manner and receive diet upgrades as tolerated. In addition, education on oral care should be provided to clients, family members, and caregivers in order to maintain dentition and masticatory function.
Evaluation of Dysphagia
Individuals with AD and other dementias often present with impairments of the oral and pharyngeal stages of the swallow, and autonomic nervous system dysfunction could potentially contribute to impairments of the esophageal stage of swallowing (Affoo, Foley et al. 2013). In order to develop a comprehensive swallowing impairment profile, an objective swallowing assessment should be completed, and this assessment should ideally involve visualization of the oral, pharyngeal, and esophageal stages of swallowing.
Behavioral Eating Deficits
Individuals with dementia often demonstrate behavioral eating deficits that limit oral intake and result in weight loss and nutritional compromise. These behaviors, while often viewed negatively, may be attempts to communicate unmet needs such as pain or discomfort (Kovach, Noonan et al. 2005). Consultation and investigation with the medical team, the allied health team, and with the family and caregivers may be beneficial in order to identify potential sources of pain, discomfort, fear, and confusion. A feeding assessment completed in concert with these investigations may also identify potential barriers to optimal eating and feeding. Both behavioral and environmental barriers may be observed and documented, and treatment plans may be formulated using a problem solving approach (Smith, Kindell et al. 2009). For example, prolonged feeding and delays in the initiation of the oral stage of swallowing may significantly impact the amount of food that is consumed during a single sitting (Logemann 1998). The individual with dementia may be delaying the initiation of the oral stage due to discomfort related to oral dryness or fear and confusion at mealtimes due to feeling threatened when being fed by a caregiver. The SLP can advocate for oral health assessments and educate caregivers about optimal feeding strategies. Other mealtime strategies, such as providing six or more small meals throughout the day instead of three large ones, can be implemented while assessment is ongoing.
Education and Counseling
Any interaction with the client, family, and caregivers is an excellent opportunity for the SLP to provide education and counseling around the course of dementia related to eating and swallowing deficits. If counseling and education may be provided in association with a medical team, it may also be an opportune time to discuss end of life decisions. In their position statement on feeding tube use in individuals with dementia, the American Geriatrics Society suggests, “Feeding tubes are not recommended for older adults with advanced dementia. Careful hand feeding should be offered…Families and surrogate decision-makers should receive ongoing education about the natural progression of dementia, which includes eating difficulties near the end of life. Using this approach, decisions regarding feeding options (tube or assisted oral feeding) could be delineated proactively rather than reactively” (American Geriatrics Society Ethics, Clinical et al. 2014). The SLP should play an important role in the ongoing education about the natural progression of dementia and should, as a member of the care team, be part of the discussion regarding current and end-of-life feeding options.
This review presents a summary of specific eating and swallowing features of individuals with dementia to inform and influence the current practices of SLPs working in dysphagia care with this population. SLPs play an important role in the care of individuals with dementia at all stages of the disease. Education and counseling of the client, family members, caregivers, and other members of the care team facilitates proactive, evidence-based, informed decision-making with regard to eating and nutrition in the final stages of dementia. Comprehensive assessment and advocacy may result in identification of eating and swallowing impairments, reversible causes of dysphagia, sources of discomfort and pain, and can improve oral health, eating and swallowing, nutritional status, and overall quality of life in all stages of the disease.
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