Nonpharmacological Approaches to Treating Neuropsychiatric Symptoms of Advanced Dementia: Person-Centered, Stage-Related Care

Dementing illnesses are brain diseases that impair cognitive and physical functioning. For most persons, the illnesses also impair aspects of neuro­psychiatric (behavioral and psychological) functioning. Neuropsychiatric symptoms such as apathy, depression, and psychosis further decrease func­tional independence and quality of life (Kaup et al. 2007; Lyketsos 2007; Samus et al. 2005). In addition, they create serious caregiving challenges and are often a primary reason for transition to nursing home care (Chan et al. 2003; Gaugler et al. 2005, 2007, 2009; Volicer, Hurley, and Blasi 2003; Yaffe et al. 2002). Unlike the cognitive and physical functional declines of advanced dementia, neuropsychiatric symptoms can be reduced through effective treatment.

Psychotropic medications, especially the antipsychotic, carry risks for morbidity and mortality (Ballard and Waite 2006; Car­son, McDonagh, and Peterson 2006; Gill et al. 2007; Salzman et al. 2008; Schneider, Dagerman, and Insel 2005), making nonpharmacological strat­egies the preferred first line of treatment. The purpose of this post is to summarize the evidence for treating neuropsychiatric symptoms with nonpharmacological strategies in nursing home residents with advanced dementia. The goals of all treatments in advanced dementia are to reduce symptoms, decrease discomfort or distress, support dignity, and improve quality of life.

Advanced dementia refers to the final stages of dementia. Whether measured by a Mini-Mental State Exam (MMSE) (Folstein, Folstein, and McHugh 1975) score of 0-10 or lower, or some other global measure of functioning, advanced dementia is characterized by severe or very severe cognitive impairment, total dependence on others to meet basic needs, and impaired ability to communicate through the use of language. Despite severe cognitive and functional impairment, persons with advanced dementia may still show interest in people and have the ability to attend to and engage in a variety of sensory activities. Approxi­mately 40% of nursing home residents diagnosed with dementia are in the advanced stages with severe or very severe cognitive impairment (Gruneir et al. 2008 ).

(1)  close relationships between resident, family, and a consistent care team;

(2)  staff empowerment and additional training; (5) collaborative decision­making among the healthcare team members; and (6) ongoing quality- improvement processes (Koren 2010). A person-centered approach is to treat neuropsychiatric symptoms as meaningful and to identify and treat the needs that are being communicated by those symptoms. In recognition of the frailty of persons with advanced dementia, it is essential to work with family members and personal representatives to determine needs and preferences for end-of-life care.

Stage-Specific Care

The American Psychiatric Association’s Practice Guidelinefor the Treat­ment of Patients with Alzheimer’s Disease and Other Dementias (Rabins and McIntyre 2007) recommends the development and implementation of stage-specific treatment plans. This is in recognition that Alzheimer dementia and most other dementias are progressive and care must be adapted to the level of functioning as personal capacities change. The selection of specific nonpharmacologic therapies should be based upon the unique characteristics of the patient, the caregiver, the availability of the therapy, the severity of the neuropsychiatric symptoms, and the likeli­hood that the specific symptoms will respond to the specific therapy. The difficulty in quantifying a prognosis of six months or less limits the access of many nursing home residents, especially those with dementia, to hos­pice care where palliative care is provided, yet as life expectancy becomes shorter, the goals of care must shift from curative to palliative.

The Principles of Care

Based upon available evidence, the most recent American Association of Geriatric Psychiatry (AAGP) Position Statement outlines three princi­ples of care regarding neuropsychiatric symptoms in dementia: (1) identify and differentiate neuropsychiatric symptoms; (2) consider possible contri­butions; and (3) make sure that contributing causes are all addressed and that basic needs are met before deciding whether specific additional treat­ments are indicated (Lyketsos et al. 2006). Medications are recommended when other approaches have failed or when there is sufficient urgency, distress, disability, or danger risk. In general, medication treatment effects for neuropsychiatric symptoms appear modest at best.

Step 1. Identify and differentiate which neuropsychiatric symptoms are present.

Symptoms such as physically or verbally aggressive behaviors are easy to detect; however, it is much more difficult to tell the difference between symptoms such as apathy and depression. Detection can be accomplished in everyday clinical practice with high reliability using systematic inter­views of patients and caregivers. Observation and caregiver reports may determine the presence and frequency of symptoms; however, there are a variety of valid and reliable assessment tools for more accurately differen­tiating among neuropsychiatric symptoms. Most must be administered by a professional who has been trained to use the tool. A list of rating scales that are used to identify and differentiate neuropsychiatric symptoms in advanced dementia appears in Table 3.2.

Neuropsychiatric symptoms in advanced dementia have been examined using several different strategies. The first is to look at single-symptom frequencies. The most frequently occurring neuropsychiatric symptoms in advanced dementia are aggressive or agitated behaviors, withdrawal or apathy, depression, and anxiety (Kverno, Rabins, et al. 2008; Lyketsos et al. 2000; Zuidema et al. 2009). The second is to look at how the symp­toms cluster together. Five common symptom clusters have been identified that remain fairly stable across all levels of dementia and into advanced dementia, including agitation/aggression, depression, psychosis, psy­chomotor agitation, and apathy (Lawlor and Bhriain 2001; Zuidema et al. 2007)    .  A third way is to examine syndromal patterns of neuropsychiat­ric symptoms, the way that people can be grouped into categories hav­ing similar patterns of symptoms. A statistical method called latent class analysis has been used to identify clusters of people with similar symp­toms. Three distinct syndromes were identified in the CareAD sample of nursing home residents with advanced dementia (Kverno, Black, et al. 2008)   :  one group with few neuropsychiatric symptoms, one characterized by withdrawal and lethargy, and a third characterized by agitation and psychosis (in addition to a high prevalence of refusal and resistance to care). Depressive symptoms frequently co-occurred with withdrawal and lethargy as well as with agitation and psychosis. Whether depression is considered a separate syndrome or not, apathy, agitation, and dysphoric symptoms are dimensions of decreased psychological well-being associ­ated with reduced quality of life in advanced dementia (Volicer, Cam- berg, et al. 1999). The identification of neuropsychiatric syndromes across different types of dementia diagnoses has important implications for treatments.

Modifiable Conditions. Modifiable conditions that are related to verbal or physically aggressive behaviors are the presence of depression, delusions, hallucinations, lack of understanding, constipation, and pain (Leonard et al. 2006; Volicer, VanderSteen, and Frijters 2009). Knowledge of a resident’ s habits and typical behaviors as well as the context of behavioral changes can help providers decipher the meaning. Pain is often evident during periods of physical movement. Pain can be expressed through verbalization (e.g., gasping, groaning, screaming), through facial expressions (e.g., grimacing, frowning), and through behaviors (e.g., guarding, pushing). Several pain scales have been developed specifically for evaluating pain in advanced dementia (see Table 3.4). By integrating a pain assessment into routine care, nurses found that not only were they better able to manage the pain of their patients, but the nurses also experienced decreased stress relative to a con­trol group of nurses (Fuchs-Lacelle, Hadjistavropoulos, and Lix 2008).

Between 50% and 70% of aggressive behaviors may be associated with caregiving activities, including behaviors that are uncooperative, resistive, or combative. Resistiveness to care is relatively rare in borderline intact and mildly impaired residents and increases gradually as the ability to understand deteriorates, with the highest prevalence in those with very severe cognitive impairment (Volicer, Bass, and Luther 2007). Combative or resistive behavior on the part of residents may reflect fear, mispercep­tions of the need for care activities, or misperceptions of the caregiver’ s intent. In a study of 216 nursing home residents with advanced demen­tia, the majority of verbally and physically aggressive behaviors (mak­ing strange noises, grabbing, spitting, hitting, screaming, and pushing) occurred during morning care routines (Koopmans et al. 2009).

Unmet Needs. Regardless of the type of dementia, impaired communica­tion is a central problem affecting the ability to express physical, emotional, and social needs. Neuropsychiatric symptoms may represent responses to not having needs met or may represent attempts to express needs. To address unmet needs, caregivers must attempt to understand the mean­ing of the behaviors. This might include checking for and alleviating pos­sible sources of discomfort, making attempts to decrease sensory irritants by decreasing the level of noise or motion, applying glasses or hearing aids, and talking in a calm reassuring manner. Agitation or aggressive behaviors may represent a need for comfort, given the positive relation­ship found between discomfort and overall agitation, and in particular, verbally agitated behaviors (Pelletier and Landreville 2007). The goal of care is to maximize the congruence of care with the person’s needs.

The Need-Driven, Dementia-Compromised Behavior (NDB) model (Algase et al. 1996) is a model of care that explains neuropsychiatric symptoms as an expression of needs. The needs may be physical (e.g., pain, hunger, feeling cold) or they may be more psychosocial (e.g., loneli­ness, fear). The Consequences of Need-Driven, Dementia-Compromised Behavior (C-NDB) theory (Kovach et al. 2005) explains how ineffective caregiver responses to perceived needs may actually increase agitation and behavioral symptoms, resulting in yet more unmet needs. A study of nurses ; responses to behavioral symptoms indicated that repetitive use of ineffective interventions was associated with the most recurrences of problematic behaviors, suggesting a need for more assessment and criti­cal thinking when it comes to responding (Kovach et al. 2006). If an inter­vention does not reduce the symptom, there may be another source of discomfort or another need that has not been identified, so further assess­ment and interventions are warranted.

Stress Reactivity and Levels of Arousal. The behaviors of persons with advanced dementia may reflect imbalances in arousal and difficulties with self-regulation. The inability to process or regulate sensory, cognitive, social, or affective information may trigger agitation and aggressive behaviors. Likewise, physical, social, or environmental forms of sensory deprivation may result in apathy and withdrawal. Three care models have addressed stress reactivity and arousal levels: the Balancing Arousal Controls Excesses (BACE) model (Kovach et al. 2004), the Stimulation-Retreat model (Lawton et al. 1998), and the Progressive Lower Stress Threshold (PLST) model (Hall and Buckwalter 1987; Smith et al. 2006). Each model advocates using neu­ropsychiatric symptoms to gauge activity and stimulation levels. Caregiv­ers are responsible for reducing stimuli when behaviors indicate overarousal (agitation, aggressive behaviors), and increasing stimuli when behaviors indicate underarousal (apathy, depression). The Arousal States in Dementia Scale, ranging from sleep to high arousal, was developed by Kovach et al. (2004) to help nursing staff balance the daily arousal levels of persons with advanced dementia. The environments can be modified to be more stimulat­ing by using bright colors and promoting socialization. Environments are less stimulating when they have reduced visual, auditory, and social contact.

Step 3. Make sure that contributing causes are all addressed and that basic needs are met, and then decide if a specific additional treatment is needed.

Use of Psychotropic Medications. The most recent AAGP Position State­ment recommends that, when treating noncognitive neuropsychiatric symptoms associated with Alzheimer disease, nonpharmacologic inter­ventions be tried prior to medications, unless there is sufficient urgency, distress, disability, or danger risk (Lyketsos et al. 2006). A person-centered, stage-specific treatment plan should take into account that advanced dementia is the final stage of a terminal illness. Geriatric-palliative mod­els of care are appropriate for treating advanced dementia. A geriatric- palliative care approach takes into consideration the life expectancy, time until benefit from medications, goals of care (palliative vs. curative), and treatment targets (symptom management vs. symptom prevention), and attempts to modify medications to discontinue inappropriate medications while adding or increasing medications that may manage treatable symp­toms and prevent undue suffering (e.g., pain, depression) (Garfinkel, Zur- Gil and Ben-Israel 2007 ; Holmes 2009 ).

Pharmacologic management for neuropsychiatric symptoms will be covered elsewhere in this volume; however, it is clear that some neuropsy­chiatric symptoms are more appropriately treated with medications than others. Depression, for example, is a disorder that impairs quality of life and reduces a person’s ability to engage in life, and should be treated vigorously if it exists, especially considering that aggressive behaviors may be modifi­able consequences of depression (Leonard et al. 2006; Lyketsos et al. 1999; Volicer, VanderSteen, and Frijters 2009). Agitation or aggressive behav­iors, however, may be attempts to express needs or resist care attempts and should not automatically be treated with medications. Even psychotic symptoms may represent sensory deprivation and vision loss, inappropri­ate sensory stimulation, or underlying medical complications, and should not automatically be treated with antipsychotics (Cohen-Mansfield 2003).

Psychotropic drugs are associated with significant risks includ­ing reduced well-being, increased time spent socially withdrawn, and reduced time engaged in activities (Ballard et al. 2001). Studies of nurs­ing home residents with advanced dementia indicate that 28-65% are tak­ing psychoactive drugs (Koopmans et al. 2009; Zuidema et al. 2009), and the vast majority (78%) of residents with neuropsychiatric symptoms are treated with psychotropics (Kverno, Rabins, et al. 2008). Adverse medication effects such as constipation, sedation, and blurred vision may impair the ability to participate in meaningful activities relevant to quality of life. The use of an evidence-based geriatric-palliative approach provides person- centered, stage-specific medication management that addresses the sig­nificant complexities of treating nursing home residents with advanced dementia who have multiple comorbidities and functional impairments.

Specific Nonpharmacological Treatments. Nonpharmacological treatments are the treatment of choice for neuropsychiatric symptoms in advanced dementia. The American Psychiatric Association’s Practice Guideline for the Treatment of Patients with Alzheimer’s Disease and Other Dementias (Rabins and McIntyre 2007) identifies four major categories of treatments, each with specific aims. Cognition-oriented approaches aim to restore cognitive deficits by using strategies such as reality orientation and skills training. Emotion- oriented approaches aim to stimulate memory and mood in the context of the patient’s life history. Examples of emotion-oriented approaches include reminiscence, validation, supportive psychotherapy, sensory integration, simulated presence. Behavior-oriented approaches aim to reduce problematic behaviors by identifying the antecedents and then modifying the environ­ment or caregiving strategies to reduce the probability of response. Stimu­lation-oriented approaches aim to decrease neuropsychiatric symptoms by influencing arousal levels, providing stimulation for enrichment, or reduc­ing stimulation to promote relaxation. Examples of stimulation-oriented approaches include all activity and sensory-based therapies.

Person-centered, stage-specific interventions are based upon knowing the preferences and abilities of each resident. Preferences may be gleaned by talking with family members, identifying past interests or hobbies, finding out about preferred types of music, and by observing responses. Inventories such as the CMS-mandated Minimum Data Set (MDS) can also help determine activity preferences. Prescription of stage-specific therapies should also be based upon sound evidence. Unfortunately most dementia intervention studies have not been stage-specific. A recent review (Kverno et al. 2009) of the last ten years of intervention research for treating neu­ropsychiatric symptoms of advanced dementia with nonpharmacological therapies indicated that out of 215 studies, only 21 specifically studied treatments for persons with moderate to severe cognitive impairment, and only four specifically studied treatments for persons with severe cognitive impairment (MMSE scores of <10). The paucity of stage-specific research in advanced dementia potentially reflects the ethical and logistical compli­cations relevant to including frail elders with advanced dementia in inter­vention studies. The following section will review the available evidence and present recommendations for caregivers.