Geriatric Nursing
Volume 28, Issue 5 , Pages 283-288, September 2007

Assisted Living Nursing Practice: The Language of Dementia: Theories and Interventions

Ethel Mitty and Sandi Flores

Article Outline

The person with dementia uses behavior to communicate, but their behavior is altered by the combination of neurological damage and impairment, altered interpersonal relationships and reactions of others, and the individual’s loss or weakening of their lifelong defenses or coping mechanisms. This article discusses the routes by which behavior can be understood and describes a constellation of needs of a person with dementia that has a unique fit with person-centered care. Three evidence-based models (theories) and interventions specific to dementia behaviors are discussed: the Need-Driven Dementia-Compromised Behavior Model, the Progressively Lowered Stress Threshold Model, and the utilization of self-identity roles. Montessori-based activities are another approach to person-centered dementia care that respect, as do the models, the dignity, worthiness and interests of the person afflicted with dementia. The models discussed in this article all seek to improve the quality of life of the person with dementia. Other than those at the profound end stage of dementia, most sufferers can communicate feelings. Subjective quality of life must be determined based on the self-report of the person suffering with dementia so that treatment interventions and effectiveness are grounded in that person’s reality.

 

The presentation of dementia—cognitive impairment—varies as a result of 3 major influences: personality and past history of the person afflicted, the observer (most commonly the formal or informal caregiver), and the environment. The person with dementia is attempting to communicate with his or her behavior,1 but their behavior is altered by the combination of neurological damage and impairment, altered interpersonal relationships and reactions of others, and the individual’s loss or weakening of their lifelong defenses or coping mechanisms.2 This article begins with a description of 6 pathways that might capture and frame the way in which dementia behaviors can be understood so that caring can be person-specific, respectful, and effective.2 Experiential learning exercises for staff are included in this section. The discussion about dementia and person-centered care—a driving principle of care in assisted living—lays the groundwork for the subsequent description of 3 evidence-based models (theories) and interventions specific to dementia behaviors: the Need-Driven Dementia-Compromised Behavior Model,3 the Progressively Lowered Stress Threshold Model,4 and the utilization of self-identity roles.5 The Montessori approach is another way to help those with dementia “shine through and help themselves” (p. 4).6

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Understanding Dementia Behavior 

Narratives written by older adults with (early/mild) dementia are dynamic and important but unfortunately are dependent on the ability to express feelings and thoughts in writing. A second pathway to understanding is through attentive listening to what is being said—a route open even to those with severe dementia. (Findings from various pain studies indicate that people with mild or moderate dementia are able to describe or verify their level of pain.7 Careful attending to the spoken word is not an easy “anyone can do it” skill because the narrator might be using metaphor, allusion to past events, and verbal and nonverbal messages to communicate meaning and emotion (e.g., feeling out of control, a burden, abandoned, angry), acceptance, and his or her need for reassurance.

A third pathway, and one that until recently tended to be overlooked or characterized as meaningless is listening carefully and creatively to what the person is saying and doing in the course of his or her day. This includes attending to perseverative or repetitive behavior or vocalization. Kitwood2 suggested that aggressive behavior or offensive language might be an older adult’s attempt to remain significant by, literally, “making his mark” (p. 16) on others. Pulling at one’s clothing, rubbing and pinching parts of one’s body, rocking to and fro could be a form of “self-stimulation: a last desperate bid to remain psychologically alive when the external environment has largely failed to provide … security and occupation” (p. 16).

Fourth, listening to the report of people who have experienced a dementia-like illness and recovered can be instructive. These narratives particularly describe their functioning in new and, for them, odd ways, their inability to complete a thought or sentence, their failure to recall simple instructions from moment to moment, and the enormous effort needed to accomplish the simplest task. Given that many persons with dementia also experience significant depression, the narratives of people who have recovered from depression is important because they describe being in an almost continuous state or fear of panic.

Using one’s “poetic imagination” is a fifth pathway to understanding, but it is a subjective approach. The listener takes the things said by the person(s) with dementia and converts it into his or her own personal expression. In this way, the person with dementia’s profound sense of alienation, futility, unfamiliarity, fear, shame, chaos, and myriad other emotions can be heard. Consider this exercise/experience for direct-care staff: direct them to 1) collect 3 to 5 statements made by one of their residents and then 2) state what the resident is saying in his or her own words.

The sixth and final pathway uses role-play—becoming the person with dementia. Kitwood2 suggested that guided role play can move understanding beyond intellectual understanding to one that is closer to “genuine ‘standing under’: feeling the shape and weight of things, knowing them in action rather than in mere reflection” (p. 17).

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Dementia and Person-Centered Care 

The concept of psychosocial needs and person-centered care might be addressing the same phenomenon. Kitwood2 defined “need” as “that without which a human being cannot function, even minimally, as a person” (p. 19). Rather than constructing a hierarchy of need, Kitwood suggested a cluster of 6 universal needs: attachment, comfort, identity, occupation, and inclusion, with love in the middle of the cluster. Persons with dementia “often show an undisguised and almost childlike yearning for love”2 (p. 19) that is unconditional, full, and not contingent on reward and reciprocity. The cluster of needs, present in all people, is more intense in those who are becoming cognitively impaired, especially because they are more vulnerable to instability, have weakened coping defenses, and are less capable of independently initiating an action that will fulfill their needs. Each person’s needs present differently, on the basis of personality and stage of dementia. The intensity of need is thought to increase with advancing dementia.

Attachment is a universal and serves, among other things, to secure and affirm safety and security. It also helps ground an individual’s notion of self—his or her being-ness. The notion of comfort includes alleviating pain, reducing anxiety, and supporting wholeness. Kitwood2 suggested that the person’s need for comfort could be especially acute when confronting a sense of loss—of another person (or self), a way of life, or abilities. Heightened sexual desire, he suggests, might be a representation of this need. Identity, by and large conferred by others, speaks to continuity and consistency; it is having a life story narrative. Absent this recognition by others, the person with progressive dementia experiences heightened isolation and alienation. Occupation, whether in the company of others or in solitude, need not have specific goals other than enjoyment and engagement. Hence, the importance of knowing as much as possible about the person’s past interests and lifestyle, tastes, and passions. The Montessori approach to engagement, particularly in late-stage dementia, relies on trial and error to capture the person’s interest.6 It provides occupation for the individual that is pleasurable, purposeful, and value-free.

Inclusion in some kind of group—family or social—speaks to being a part of something, having a role to play. Loss of feeling “included” can precipitate attention-getting behavior, physically holding on to another person, even to the point of disruptive behavior. Failure to address this need can heighten the territoriality noted in many persons with midstage dementia manifest as extreme unwillingness to relinquish a particular chair or place in the dining room, corridor, or sitting area. In sum, Kitwood’s2 concept of needs is an opportunity for guided learning through which staff can, for example, imagine and express what the reduction or absence of a (selected) need would mean to them (or to one of their residents).

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Describing Behavior 

Since the 1990s, the language used to describe behavior displayed by persons with dementia has changed. It has moved from words connoting control to words of compassion; from blaming to understanding. Effective, person-centered interventions need to rely on descriptors that have a uniform meaning to the users; for example, how many meanings (and other behaviors) can be attributed to the behavior known as “agitation?” Documentation of behavior needs to describe the context (environment) of the behavior and the antecedents (i.e., possible triggers) to its appearance to answer a basic question: What is the person trying to communicate by his or her behavior?

Smith and Buckwalter1 described 4 standardized assessment instruments (see list below) that assessed different sets or types of behavior. It is important to select the instrument that can best capture the constellation of behaviors the person is enacting to devise the most appropriate plan of care. Each of the instruments cited in their article is listed in the references at the end of this article.

1.Neuropsychiatric Inventory8 looks at the severity and frequency of 12 commonly observed behaviors in dementia: agitation, anxiety, abnormal motor behaviors, appetite/eating abnormalities, disinhibition, nighttime behavior disturbances, delusions, dysphoria, hallucinations.

2.Behavioral Pathology in Alzheimer Disease Rating Scale9 assesses 7 areas including disturbances in diurnal rhythm, affect, and phobias.

3.Cohen-Mansfield Agitation Inventory10 looks at the daily frequency of 36 behaviors representative of verbal and physical agitation.

4.Agitated Behavior in Dementia Scale11 looks at the daily frequency of 16 behaviors associated with verbal and physical agitation.

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Models of Dementia Care 

Need-Driven Dementia-Compromised Behavior Model (NDB) 

This model holds that behaviors typically characterized as “disruptive” can be understood as expressing a need; an appropriate response can improve the person’s quality of life. Behavior is the result of interacting “background” and “proximal” factors. The 4 groups of background factors cannot be modified and are essentially unamenable to treatment, but they can influence the behavior of the person with dementia: the disease itself (e.g., language deficits), personal demographics, poor health status, and personality traits. Proximal factors are unmet needs that can be addressed and are the basis of the individualized plan of care: unmet psychosocial needs (e.g., need for inclusion, attachment, a friend), unmet physiologic need (e.g., comfort, pain relief), environmental issues (e.g., noise), and unappealing social surroundings (e.g., too many or too few people in the space).

The Simple Pleasures Project, based on the NDB model, sought to demonstrate that appropriate activities could reduce wandering, vocalizing, and physical aggression—the most frequent disruptive behaviors of nursing home residents. These behaviors represent an unmet need; that is, they are a behavior created by the resident to alleviate boredom and inactivity. The project used volunteers to create inexpensive recreational articles and use the items with the residents. It was hypothesized that residents’ isolation, inactivity, and disruptive behaviors would lessen as a result of being in an environment with readily available recreational items, as well as the opportunity to socialize. Increased visits by families and other visitors was associated with their being able to use the Simple Pleasure items during their visits; satisfaction with visits also improved. Findings demonstrated that agitation was reduced as was inactivity and self-stimulating behaviors.

Progressively Lowered Stress Threshold Model (PLST) 

This model posits that 1) an individual’s stress threshold is basically set and stabilized by adulthood and 2) as the dementing illness progresses, the person experiences a reduced stress threshold resulting in counterproductive behaviors and anxiety. Stressors include pain, illness, fatigue (inadequate sleep); caregiver and environmental changes; self-care and self-directing demands that exceed the person’s capability; medication abreaction; and overstimulation. The PLST is primarily based on the notion of the person-environment fit and interaction, a perspective developed in the 1970s. It holds that environmental conditions must be modified for those with progressive cognitive decline such that they can more easily process cues; hence, the environment becomes less stressful. The model is intended to provide caregivers with a means to understand the behavior, select from particular strategies designed to address the specific need being expressed by the person at the time, and evaluate the intervention.

The application of PLST principles to nursing interventions reportedly improved nutritional intake, socialization and sleep, and reduced agitation, dysfunctional behaviors, wandering, and psychotropic medication use.4 A PLST protocol designed to reduce stress for family members after placing their relative in a nursing home is reportedly highly effective in creating a staff-family caregiving partnership, easing family transition from direct caregiver to one that is more indirect but supportive; it also increases satisfaction for staff as well as families. The research-based reports of PLST derive from nursing home settings, special care units, home care, adult day care and acute care. There is no research evidence from an assisted living setting; this is clearly necessary, particularly research on the effect of impaired sleep.

Principles of care in the PLST model include unconditional respect, attentive listening, simplification of personal care tasks and routines, assessment of the person-environment activity and stimulation levels, and environmental modification. A generic plan of care based on the PLST principles includes the following:

•Reduction of internal and external environmental stressors such as caffeine, excessive noise, and too many people per amount of space

•Assisting the person with decision making so that it furthers the individual’s best interest and preferences

•Unconditional respect and acceptance by avoiding pressure on the individual to make the “best” response, negative feedback such as “that’s not right,” and confrontation

•Recognition of reduced stress tolerance and energy by suggesting rest periods and identification of stressors (internal, external) and upset behavior through observation and attentive listening

Self-Identity Roles for Designing Interventions 

A basic premise of this approach is that identity is constructed in a social context and is maintained by memory and reinforcement from the environment. The loss of self, of identity, has been expressed by those afflicted with dementia and addressed by many family members and observers. Precipitated by progressive memory loss and inability to communicate, identity becomes more elusive as the severity of dementia increases. However, many clinicians hold that personal identity is present well into the late stages of dementia, especially with regard to important roles held in the past. Thus the person with dementia might lose “control” over his or her identity but not necessarily of self, of personhood. Several researchers have observed that the environment influences representation of “self” for the person with dementia.5, 12, 13 Kitwood2 believed that a devaluating environment was a “malignant” environment.2 Cohen-Mansfield and colleagues13 reported that agitation was a sign of discontent among persons with dementia.

A person-centered intervention designed to strengthen a reported self-identity and specific role attributes improved the well-being of persons with dementia.5 Role identity was associated with 4 domains: family, professional, leisure/recreational activities, and personal characteristics. Roles were ranked on the basis of most important lifetime role, a role that was important in the past and present, and consistency of the dementia person’s response. Theoretical premises for the intervention were based on Kitwood’s2 work, the NDB, and the “best friends” approach to dementia care.14 The intervention was built around information about the particular job associated with the role/identity, the family member most important to the person, specific interests or hobbies enjoyed by the person, and his or her capabilities (cognitive, physical, sensory), educational level, and language skills. It had to have meaning and a sense of purpose for the person. Interventions included use of family photos, creating a family tree, construction and cooking projects, displaying a creative achievement, listening and reminiscing using music, audiotapes, film, and so on. Specific positive outcomes included decreased levels of agitation, increased participation in activities, and reduced disorientation. Family members were particularly affected by the outcomes for their loved one, and several continued the intervention after the study ended.

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Montessori and Dementia 

Dr. Maria Montessori pioneered a new approach to children’s education, one that emphasized freedom of choice of activity or task and at a pace that was comfortable for the child. She focused on what was possible rather than on barriers. One approach that appears to be successful with mild to moderate dementia is based on principles of rehabilitation—presentation of a task that moves from simple steps to greater complexity and repetition—and on principles of dementia intervention, such as cueing and retained memory.15 On a dementia unit in a skilled nursing facility, participants in the Montessori program appeared more engaged and pleased than participants in a regular activities program. Dr. Cameron Camp, director of the Myers Research Institute, feels that using the Montessori approach provides some intellectual stimulation and challenge while remaining nonthreatening. Their initiatives have achieved some positive outcomes in activities of daily living using guided task sequencing in self-feeding and dressing.

Montessori-based activities (MBA) seek to identify the person with dementia’s evolving interests, preferences, and capabilities as the disease progresses. The goals are open-ended; the objective is stimulation, engagement, and meaningfulness. Success is measured verbally and nonverbally—by the person’s facial and body expression of pleasure, and contentment. Principles of MBA include observation, a necessary precursor to selecting items and activities of interest; clear and simple instructions (including asking the person to help with a task, such as sorting socks); encouragement and positive feedback; cueing that includes recognition that the person has lost interest in and requires a different activity; increasing skill complexity, as tolerated; repetition of a pleasurable activity several times a week; and trial and error to figure out which activities are not sufficiently engaging, those which offer a little challenge, and those which are overwhelming and counterproductive.6 Absent rigorous empirical studies, anecdotal data suggest that engagement reduces boredom, anxiety, and agitation and improves sleep, function, and morale. Program success relies in good measure on avoiding characterization of the activity as child’s play or busywork.

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Quality of Life 

The models discussed in this article all seek to improve the quality of life of people with dementia. The dilemma is in the details—that is, measurement or assessment of quality of life.16 Just as the Mini-Mental State Examination (MMSE) cannot and should not be used as a “capacimeter” to determine whether a person with dementia has the capacity to make a treatment decision,17 the MMSE may not be useful to screen (in or out) the person’s ability to be interviewed about his or her quality of life.18

Aptly summarized almost a decade ago and confirmed by researchers since that time, it remains true that many older adults with moderate to severe dementia are able to answer questions about their quality of life19 and to make authentic choices that reflect their values and preferences.20 Another study confirmed that persons with mild to moderate dementia are capable of reliable and consistent subjective report of certain aspects of their lives.21

The ethical principles of respect and self-determination are implied by these studies: subjective quality of life must be sought and based on the self-report of the person with dementia so that treatment interventions and effectiveness are grounded in that person’s reality. The 3 models of dementia care discussed in this article respect and value personhood and provide an evidence-based approach for the plan of care for those with dementia in assisted living communities.

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References 

  1. Smith M, Buckwalter K. Behaviors associated with dementia: whether resisting care or exhibiting apathy, an older adult with dementia is attempting communication (Nurses and other caregivers must learn to “hear” this language). Am J Nurs. 2005;105(7):40–52
  2. Kitwood T. The experience of dementia. Aging Ment Health. 1997;1:13–22
  3. Colling KB, Buettner LL. Simple Pleasures: interventions from the Need-Driven Dementia-Compromised Behavior Model. J Gerontol Nurs. 2002;28(10):16–20
  4. Smith M, Gerdner LA, Hall GR, et al. History, development, and future of the Progressively Lowered Stress Threshold: A conceptual model for dementia care. J Am Geriatr Soc. 2004;52(10):1755–1760
  5. Cohen-Mansfield J, Parpura-Gill A, Golander H. Utilization of self-identity roles for designing interventions for persons with dementia. J Gerontol Psychol Sci. 2006;61B:202–212
  6. Love K. Montessori-based activities (A guide for using therapeutic engagement to enhance function for individuals with dementia). Washington DC: District of Columbia Office on Aging; 2006;
  7. Flaherty E. Assessing pain in older adults. In: Try This: Best Practices in Nursing Care to Older Adults. 1:New York: Hartford Institute for Geriatric Nursing; 2000;(7)
  8. Cummings JL. The Neuropsychiatric Inventory: assessing psychopathology in dementia patients. Neurology. 1997;48(suppl 6):S10–S16
  9. Reisberg B. Behavioral symptoms in Alzheimer’s disease: phenomenology and treatment. J Clin Psychiatry. 1987;48(suppl):9–15
  10. Cohen-Mansfield J. Measurement of inappropriate behavior associated with dementia. J Gerontol Nurs. 1999;25(2):42–51
  11. Logsdon RG, Teri L, Weiner MF, et al. Assessment of agitation in Alzheimer’s disease: the Agitated Behavior in Dementia Scale (Alzheimer’s Disease Cooperative Study). J Am Geriatr Soc. 1999;47(11):1354–1358
  12. Small JA, Geldart K, Gutman G, et al. The discourse of self in dementia. Ageing Society. 1998;18:291–316
  13. Cohen-Mansfield J, Marx MS, Werner P. Agitation in elderly persons: an integrative report of findings in a nursing home. Int Psychogeriatr J. 1992;4(suppl 2):221–241
  14. Bell V, Troxel D. The best friends approach to Alzheimer’s care. Baltimore, MD: Health Professions Press; 1997;
  15. Orsulic-Jeras S, Schneider NM, Camp C. Montessori-based activities for long-term care residents with dementia. Topics Geriatr Rehabil. 2000;16:78–91
  16. Brod M, Stewart AL, Sands L, et al. Conceptualization and measurement of quality of life in dementia: the Dementia Quality of Life Instrument (DQoL). Gerontologist. 1999;39:25–35
  17. Mezey MD, Teresi J, Ramsey G, et al. Testing the decision-making capacity of nursing home residents to execute a health care proxy. J Am Geriatr Soc. 2000;48:179–187
  18. Mozley CG, Huxley P, Sutcliffe C, et al. “Not knowing where I am doesn’t mean I don’t know what I like”: cognitive impairment and quality of life responses in elderly people. Int J Geriatr Psychiatry. 1999;14:776–783
  19. Sands LP, Ferreira P, Stewart AL, et al. What explains differences between dementia patients’ and their caregivers’ ratings of patients’ quality of life?. Am J Geriatr Psychiatry. 2004;13:272–280
  20. Feinberg LF, Whitlach CJ. Are persons with cognitive impairment able to state consistent choices?. Gerontologist. 2001;41:374–382
  21. Logsdon RG, Gibbons LE, McCurry SM, et al. Assessing quality of life in older adults with cognitive impairment. Psychosom Med. 2002;64:510–519

ETHEL MITTY, EdD, RN, is an adjunct clinical professor of nursing at the College of Nursing, New York University, and a consultant in long term care at the John Hartford Institute for Geriatric Nursing, College of Nursing, New York University.

SANDI FLORES, RN, C, is executive director of the American Assisted Living Nurses Association and education director of Community Education LLC (www.communityed.com).

PII: S0197-4572(07)00233-9

doi:10.1016/j.gerinurse.2007.08.009

Geriatric Nursing
Volume 28, Issue 5 , Pages 283-288, September 2007

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