J. Cohen-Mansfield
INTRODUCTION
Non-pharmacological approaches to the care of persons with dementia differ from pharma- cological treatment in that they consider the interaction between the person, caregiver, envir- onment, and system of care in the treatment design. Such interventions generally provide more personalized care for these individuals, addressing their needs and considering their preferences. Non-pharmacological interventions have been used to address many types of behavioural and psychological symptoms of dementia (BPSD), such as depressed affect, delusions, hallucinations, sleep disturbances, and agitation, which includes restlessness, aggression, and verbal/vocal behaviour problems. This chapter presents a framework for implementing such interventions, provides examples from the literature on existing inter- ventions, discusses the research findings regarding these interventions, and argues for increased advocacy to support their research and use.
WHY USE NON-PHARMACOLOGICAL APPROACHES?
Non-pharmacological approaches to care for persons with dementia are based on a wide range of theoretical orientations and present a broad array of methodologies. Rather than viewing the patient’s disease or symptoms as the problem, this perspective considers the interaction between the patient, caregiver, environment, and system of care, and ascertains treatment accordingly (Figure 15.1). While the specific goals of treatment can also differ between phar- macological and non-pharmacological approaches, both can be used for many purposes, including addressing BPSD. The exact scope of BPSD varies in the literature, and tends to include affective, perceptual and behavioural problems in dementia [1]. Non-pharmacological interventions have also been used for purposes beyond BPSD, such as improving function (activities of daily living [ADL] performance), enhancing cognition, and reinforcing a positive sense of self. In this chapter, we will focus on non-pharmacological interventions addressing BPSD. Non-pharmacological interventions have been described in the literature and summa- rized in many recent reviews [2–11].
A number of questions must be answered before decision makers commit to any treat- ment plan, including: What is the goal of treatment? Who needs to be treated? Whose prob- lem is being treated? Whose reality is being considered? Whose needs and preferences take precedence? Answers to these questions will determine the treatment’s ultimate goal, which will then dictate the selection of intervention.
Jiska Cohen-Mansfield, PhD, ABPP, Professor/Research Director, Research Institute on Aging, Hebrew Home of Greater Washington, Professor, Department of Health Care Services and of Prevention and Community Health, George Washington University Medical Center and School of Public Health, Washington, DC, USA
©Atlas Medical Publishing Ltd 2007
The goal of treatment is especially important to identify when dealing with a conflict of interests. For example, reminding a person with dementia of an unpleasant event (e.g. that his father died) may improve his grasp of reality, but will conflict with the goal of patient comfort. Cleanliness may at times be at odds with personal autonomy, as an individual with dementia may prefer not to take a bath. (Autonomy is extremely important, but at times may need to be compromised to prevent pain and suffering due to infection.) Sometimes it is possible to accomplish both goals or to minimally compromize both, but in other instances a choice must be made. Comfort and positive life experiences are often more relevant for persons with dementia than experiencing reality that is consistent with that of caregivers.
The approach underlying the discussion in this chapter assumes that a positive life experi- ence, or at least the absence of negative experiences, is a goal that takes priority over those of improved function.
PRELIMINARY REQUIREMENTS FOR NON-PHARMACOLOGICAL INTERVENTIONS
The provision of information to caregivers of persons with dementia is an essential non- pharmacological intervention. Knowledge of the disease, as well as specific symptoms and their aetiology, meaning, and management will allow caregivers to better understand the individual’s behaviours rather than attributing them to resistance, difficult personality, malicious intent, craziness, or indifference. Ongoing caregiver support offering continuous opportunities to seek advice has been shown to help caregivers and postpone the institu- tionalization of persons with dementia [12].
A second prerequisite for non-pharmacological interventions is communication training.
Although an individual’s ability to communicate declines in advanced dementia, commu- nication skills are crucial for maintaining quality of life and for understanding the perspec- tive of the person with dementia. Caregivers must therefore be educated in communication techniques, learning to observe, listen, speak, ask questions, and offer alternatives in ways that will maximize the individual’s ability to receive and transmit information.
Communication training for caregivers of persons with dementia focuses on environmental aspects of communication (e.g. approaching slowly, communicating at eye level), content, phrasing, and interpreting non-verbal or confused verbal communication. Phrasing sen- tences in a short and clear way [13], on a level compatible with the person’s understanding [14], and asking questions in a simple, yes/no format have been recommended as helpful.
Others have advised using broad opening sentences, treating the person with dementia as an equal, sharing experiences and feelings, and finding topics that are meaningful [15].
Caregiver Staff/family/team Person with dementia
Resident/patient
Physical environment Room/institution/outdoors
System Policies/surveys/financial
administrative
Figure 15.1 Who needs to be treated?
Finally, caregivers must be aware that even when individuals with dementia do not speak in coherent sentences, their individual words may be meaningful, and their messages may be embedded in those words. Most essential is to not ignore, discount, or negate the verbal- izations of persons with dementia, but rather to view these as insights into their perspec- tives, and to use them to improve their situations whenever possible [16–18].
A third condition necessary for successful implementation of non-pharmacological inter- ventions is a positive practice style by the intervener (usually a caregiver). This practice style requires respect for the patient as a person, empathy, willingness to enhance the person’s autonomy, flexibility in addressing both care and environmental issues, and compassion towards the individual. In targeting the system, caregiver, or environment for intervention, the non-pharmacological approach imparts a greater significance to the patient’s point of view. Providing maximal autonomy to the person with dementia is a central guiding principle, which bestows greater importance on the person’s habits or pref- erences than to the convenience of the caregiving system. Understanding this point of view is an important stage in the determination of treatment. For example, in this framework, a nursing home may be expected to adapt meal times to residents’ habits and wishes rather than to the convenience of the kitchen staff members.
An intervention targeting specific behaviours should follow a thorough assessment, which should include a functional analysis examining the nature of the behaviours (assess- ment of specific symptoms), an evaluation of the interaction of symptoms with the environ- ment (antecedents, consequences), and clarification of who is negatively affected by the symptom. Systematic observation is often useful for this assessment. In addition to infor- mation about physical and mental health, the assessment taps the topics of identity, habits and preferences, and past stress, thus guiding the understanding of the aetiology of pre- sented symptoms as well as determining realistic goals and options for treatment. In ascer- taining the aetiology of symptoms, the assessor examines a multitude of issues which may elucidate their causes, including when and where the behaviour occurred, what seemed to trigger it, whether relationships between the caregiver and recipient affected the behaviour, whether the caregiver had the resources necessary to perform his/her tasks, whether the person with dementia understood the intent of the caregiver, whether the person had suffi- cient activities and social contacts, etc.
Following assessment, an intervention is chosen to match the hypothesized aetiology of symptoms, the individual’s prior habits and preferences, and his or her current abilities and limitations. The intervention may target a change in the environment, the behaviour of the staff member, the system of care, or the person with dementia. After the intervention is implemented, another evaluation is performed to determine whether the approach was helpful or whether it should be changed. A change may require a different intervention entirely, or may focus on a specific aspect of the intervention such as timing, dosage, pre- sentation style, etc.
GENERAL FRAMEWORK
The heterogeneity of the manifestations of dementia stems from three sources: predisposing characteristics, life events, and the individual’s current condition. Each of these occurs in sev- eral domains: a genetic/biological/medical domain, a psychosocial domain, and an environ- mental domain [19]. These factors affect how dementia is manifested in areas of functioning such as affect and behaviour. Mapping these sources through correlation studies has proven useful in illuminating common causes for difficulties in caring for individuals with dementia.
Non-pharmacological intervention techniques used with persons with dementia can be organized along several dimensions: the function of the intervention, its underlying theory, the type of activity undertaken during the intervention, and the population subgroups for which a technique is appropriate. Interventions should be ranked by their effectiveness
within a subgroup for certain goals with specific outcome criteria. This chapter will exam- ine examples of interventions according to their purposes, namely: management of agita- tion/behaviour problems, treatment of depression and improvement of affect, treatment of psychotic symptoms, and addressing sleep disturbances. The list of interventions is not exhaustive, but provides examples of currently available interventions.
BEHAVIOUR PROBLEMS/AGITATION
Agitated behaviours in the nursing home manifest as three subtypes: aggressive behaviours (e.g. hitting, kicking, pushing, scratching, tearing things, biting, spitting, cursing, or verbal aggression); physically non-aggressive behaviours (e.g. pacing, inappropriate dressing and undressing, trying to leave the nursing home, handling things inappropriately, general restlessness, repetitious mannerisms); and verbal and vocal agitated behaviours (e.g. com- plaining, constant requests for attention, negativism, repetitious sentences or questions, screaming) [20].
Verbally and vocally agitatedindividuals suffer from more medical conditions and higher levels of pain and depressed affect in comparison to others in the same care setting [21].
These behaviours are more likely to manifest themselves in the evening, when persons are alone, physically restrained, and/or when they are involved in ADL, especially toileting and bathing [22]. These findings support the notion that at least some verbally agitated behaviours are associated with discomfort, pain, or unmet social needs.
Physically non-aggressive behaviours. Persons who engage in physically non-aggressive prob- lem behaviours have been reported to have fewer medical diagnoses and better appetites than other nursing home residents [21]. Wandering and pacing, the most common forms of phys- ically non-aggressive agitation, occur most frequently in a corridor and near the nurses’ sta- tion, where other people often spend time [23]. Wandering/pacing takes place under normal conditions of light, noise, and temperature, rather than during uncomfortable environmental conditions. Relatively healthy individuals who suffer from advanced dementia [24, 25] may manifest these behaviours as a form of stimulation, as opportunities for meaningful activities are limited by their dementia and the nursing home environment.
Physically aggressive disruptive behavioursare more likely to be manifested by individuals with severe cognitive impairment [24–26], particularly when individuals with advanced dementia respond to uncomfortable stimuli (while performing ADLs, or feeling cold) or perceive situations to be threatening (e.g. invasion of personal space) [27, 28]. One study found aggressive behaviours to be related to physical pain [29]. Aggressive behaviours are also more likely to be manifested by males and by persons with pre-morbid tendencies towards aggressive behaviour [30–32].
Conditions affecting most types of inappropriate behaviours. Most disruptive behaviours (with the exception of pacing) have been shown to be manifested more frequently under the fol- lowing conditions: when physical restraints are used, when residents are inactive, when resi- dents are alone, when staffing levels are low, or when it is cold at night. Disruptive behaviours are less likely to be demonstrated when structured activities are offered, when music is play- ing, or when residents are involved in social interaction [27]. These results concur with the hypothesis that agitated behaviours frequently signal discomfort and unmet needs.
Based on the findings described above, agitated behaviours are conceptualized as resulting from an interaction between lifelong habits and personality, current physical and mental conditions, and physical and psychological environmental factors [33]. More specifically, most agitated behaviours are manifestations of unmet needs. An individual with dementia is unable to independently fulfill these needs because of a combination of perceptual prob- lems, communication difficulties, and an inability to manipulate the environment through appropriate channels. The goal of treatment should therefore focus on uncovering and addressing the unmet needs of these individuals.