Adaptive tasks
Adaptive domains
Coping with own invalidity
Cognitive adaptation
Developing an adequate relationship with the staff
Maintaining an emotional balance
Emotional adaptation
Maintaining a positive self-image
Preparing for an uncertain future
Coping with the nursing home environment
Social adaptation
Developing and maintaining social relationships
Dröes’ description of coping strategies is based on Verwoerdt (1976) and Lazarus and Folkman (1984). Verwoerdt described various defense mechanisms in people with dementia, namely, strategies aimed at management and control such as intellectualization; separation of reason and emotion; certain obsessive-compulsive mechanisms; overcompensation and counterphobic behavior; strategies to keep the threat outside consciousness, such as suppression, denial, rationalization, projection, and introjection; and regressive strategies, such as regressive behavior, giving up, and withdrawal.
Lazarus and Folkman (1984) made a distinction between problem-oriented and emotion-oriented coping strategies. Problem-oriented strategies focus on resolving the problems that have caused tension and on restoring a sense of control. Examples are analytical strategies, such as searching for relevant information and thinking up solutions, “(…) but also strategies that focus on the individual in question, such as motivational or cognitive changes, changing the level of aspiration, mental preparation for the consequences of the disease, finding alternative ways of fulfillment and learning new skills (…)” (Dröes 1991, p. 43). Emotion-oriented strategies focus primarily on reducing the emotional tension that is caused by the consequences of the disease. Examples are “avoiding behavior, selective attention, reinterpretation of the situation and behavior strategies, such as (…) meditation, alcohol consumption, expressing anger and looking for emotional support and reassurance” (Dröes 1991, p. 43).
In most situations, people use a combination of problem-oriented and emotion-oriented strategies according to Lazarus and Folkman (1984). However, when the stress situation is appraised as impossible to control or influence (as may happen in the case of serious illness), people generally tend more toward emotion-oriented ways of coping.
Although there is a clear distinction between the various adaptive tasks in theory, it is not always possible in everyday practice to infer from the way in which he behaves with which adaptive task the elderly person with dementia has a problem. A correct interpretation of the behavior (Dröes refers to this as “psychosocial diagnosis”) is therefore always based on a combination of knowledge about the person, his life history, his personal experience of the situation and his functional abilities, an analysis of the social and material circumstances in which the behavior occurs, and an understanding of the coping strategy (strategies) he uses.
In view of all this, it is obvious that the adaptation process is complex and dynamic, and also interactional, i.e., the continuous interaction with the environment affects the coping behavior (external cycle). This creates an opening for the environment to influence disruptions in behavior and mood by means of, among other things, emotion-oriented care and other treatment and support methods. Several studies confirm the “stress-coping” notion (Moore 1997). The problems indicated by people with dementia were related first of all to their own cognitive deterioration and the disabling effects this had on their everyday functioning. In addition, the problems referred to the emotional burden and social consequences of the disease for themselves as well as their environment. People with dementia indicated, for example, that it is difficult to become dependent on others and to stay in touch with friends and acquaintances (Cohen 1991; Dröes 1991; Kiyak and Borson 1992; Cotrell and Schulz 1993; Cotrell and Lein 1993). An indication for the experience of stress in dementia from neurobiological research is that several stress-regulating systems in our body prove to be highly activated in Alzheimer’s disease (Hoogendijk 1998) (Fig. 4.1).
4.1.2 Integrated Emotion-Oriented Care
In practice, the term emotion-oriented care is used as a collective name for approaches that try to link up with the experiences and perceptions of the person with dementia (Finnema et al. 2000a, b). Emotion-oriented care approaches include:
The validation approach (Feil 1989a, b), which aims at empathizing with the emotions and perceptions of the people with dementia and validating their feelings
Reminiscence, which uses objects, old photographs, and utensils (Rossaert 1989; Thornton and Brotchie 1987)
Sensory activation, i.e., attempting to make contact through various senses by means of sounds, smells, and hugs (Achterberg and Kok 1992)
Reality orientation, which aims to support the cognitive functioning of the person with dementia and therefore his sense of control, through training, offering structure, clear timetables, and aids, such as a photograph on the bedroom door and other reference points in the environment (Spector et al. 2012)
The integrated emotion-oriented care approach strives for an application of (suitable elements from) the emotion-oriented approaches mentioned, integrated in the daily care. Our starting point is the definition of integrated emotion-oriented care as formulated by Van der Kooij (2003, 2013, 2016):
“Integrated emotion-oriented care is the integrated application of emotion oriented approaches and communicative skills, customized to the individual person with dementia, taking into account his needs and physical and mental disabilities, for the purpose of offering feelings of security and trust to the person with dementia and helping him to adjust to the consequences of his illness.”
Nowadays, it is generally accepted that there are no standard prescriptions for the way caregivers should communicate with people with dementia. In every situation, it is necessary to tune into the unique personality of the person with dementia, his particular personality, his situation, his life history, his needs, and his way of coping with the disease. The most important question for the caregiver is not whether a particular method was applied as described, but whether there was a situation or a moment of mutual understanding and contact (Halek and Bartholomeyzcik 2006). Integrated emotion-oriented care focuses on the awareness of and reflection on the “moments of contact” and on building up an emotional relationship with the person with dementia (Van der Kooij 2003, 2016).
4.1.2.1 Phases of Ego-Experience and Perceptions
Little is known about how people perceive themselves during the dementia process. Integrated emotion-oriented care starts from four subsequent phases of “Ego-experience”: threatened Ego-experience, wandering Ego-experience, hidden Ego-experience, and sunken Ego-experience (Van der Kooij 2003, 2016). These phases are based on the phases of dementia as described earlier by Verdult (1993) and on Feil’s (1989a, b) four stages of disorientation: orientation problems, confusion in time, repetitive movement, and vegetation.
During the phase of threatened Ego-experience, people lose their grip on themselves and their environment. They start having trouble remembering and thinking. People they know appear to be strangers, familiar spaces are unknown, and the secure feeling about self in the continuity of past, present, and future is uprooted. The degree in which people are aware of the problems as a result of their dementia varies.
During the phase of wandering Ego-experience, the person with dementia gets lost, as it were, in an individual reality. The chronology of his past erombles, and he loses the ability to arrange and name his perceptions.
The hidden Ego-experience is characterized by apparent isolation and inaccessibility. It seems like the person with dementia resides in a personal, inner, timeless world where he doesn’t need anyone and won’t allow anyone in. Making contact is still, however, possible.
In the sunken Ego-experience, the person with dementia no longer responds to his environment; there seems to be no more interaction of feelings.
To gain some understanding of the experiences and perceptions of the person with dementia, an assessment is made of the Ego-experience phase, as well as how he experiences his current situation and how his life history influences his experience of the present. Experiencing the current situation refers to how the dementing person copes with, and experiences, the consequences of his illness and his institutionalization in the nursing home (cf. Dröes 1991).
4.1.2.2 Care Needs and Care Objectives
The different phases of Ego-experience in integrated emotion-oriented care are distinguished to provide caregivers with a frame of reference to help assess the individual care needs of people with dementia. Five general care needs are distinguished (Van der Kooij 2003), which are derived from Maslov’s (1972) hierarchy of needs and which have been modified for dementia on the basis of descriptions by, among others, Feil (1984), and Kitwood and Bredin (1992). The care needs concern being able to meet basic physical needs, security, trust and structure, contact and connectedness, self-respect, and self-realization. The general care objectives are in line with these care needs and are described as accepting dependence, experiencing security, experiencing connectedness, experiencing appreciation, and experiencing affirmation or even validation.
4.1.2.3 Methods in the Different Phases of Dementia and Phases of Ego-Experience
Although the care needs and care objectives are, to a greater or smaller extent, relevant to every phase of Ego-experience, they require different methods during different phases. Starting point for action and making contact is always the perception and experience of the person with dementia. Van der Kooij has distinguished six areas of experience: sensory, rational, emotional, physical, social, and spiritual experience. This classification of areas of experience is based in part on the stimulation of the general psychological functions “perception, thinking, and feeling,” as they are given shape in sensory activation, the reality orientation approach, and the validation approach, respectively. As the body of the person with dementia is frequently “touched” in caring and nursing contact, Van der Kooij made experience of the own body a separate field of attention in care. One approach that integrated emotion-oriented care derives techniques from in this area is the method passivities of daily life (PDL), a method that was developed by Dutch physiotherapists (Eijle and Van der Wulp 1988). In the German-speaking Europe, this is known as Basale Stimulation (Fröhlich 1991). Van der Kooij derived the experience areas social and spiritual experience from Maslov’s hierarchy of needs (Maslov 1972). Social experience refers to making contact. In this context techniques from the validation approach and reminiscence are used. Spiritual experience refers to self-realization, signification, and achieving or not achieving ego integrity. Techniques from reminiscence and the validation approach are used here (Table 4.2).
Table 4.2
Integrated emotion-oriented care in relation to adaptive tasks
Adaptive task | Integrated emotion-oriented care |
|---|---|
Coping with own invalidity | Help the person with dementia to cope with the constraints. Support him and encourage him to do the things he still can |
Developing an adequate care relationship with the staff | Behave empathetic and make use of knowledge of the life history of the person with dementia. Accept the resident as the person he was and is today |
Maintaining an emotional balance | Respect emotions and confirm or weak them off. Offer pleasant sensory stimuli (music, good food, etc.) |
Maintaining a positive self-image | Promote the dignity of the person with dementia to let him remember positive events and encourage him to do activities that he can |
Preparing for an uncertain future | Show understanding for the feelings of the person with dementia about present and future and offer activities that make it here and now makes sense |
Coping with the nursing home environment | Let the person with dementia feel at home and continue to maintain his habits to prevent hospitalization. Involve the person with dementia in recreational activities |
Developing and maintaining social relationships | Match the needs of individual contacts and encourage the person with dementia to fulfill several social roles |
4.1.2.4 Care in the Phase of Threatened Ego-Experience
Acceptance of Dependency
People in the phase of the threatened Ego-experience are generally quite able, in their own way, to take care of themselves. For that reason, caregivers take over actions, very tactfully, only when necessary. They also look for opportunities to offer options.
Experiencing Security and Trust
An important goal during this phase is to make the person with dementia experience control. Someone who feels threatened looks for security. There are various ways of helping the person with dementia in this respect: offering clearly organized options, a warm (small-scale) living environment, a fixed schedule, maintaining familiar rules of conduct, a place of one’s own, supporting the dementing person’s norms and values, developing and/or maintaining rituals and common practices (e.g., drinking coffee or reading the newspaper in a small group every morning), and making sure there are plenty of reference points, such as photographs and objects around someone’s bed, personal toiletries, and a personal chair in the living room. These are ways of creating an organized and structured environment.
Experiencing Connectedness
People in the threatened Ego-experience appear to keep others at a distance. This is often caused by fear, anger, or feelings of loneliness. Emotion-oriented care is based on the notion that these people need others to feel safe and to make contact. This can be done in many ways, for example, by radiating security and closeness. The caregiver can furthermore mirror the attitude of the person with dementia. His body language, eyes, and voice manifest tension, anger, or anxiety. By showing security, interest, and respect during the mirroring, the chances that the person feels understood are increased. This provides a basis for contact.
Experiencing Appreciation
The sense of self-worth is enhanced by appealing to personal qualities in a day program or week program, by activating familiar actions and social roles, and by asking people to do things like read to others, help with domestic or household activities, and advise or console another resident.
Experiencing Affirmation and Validation
In this phase, the person with dementia experiences himself as before and makes frenetic efforts to keep it that way. Caregivers can support the person with dementia by behaving “normally,” not correcting or confronting, and providing support only when necessary.
4.1.2.5 Care in the Phase of Wandering Ego-Experience
Accepting Dependence
Lost abilities require a prothetic approach and environment, a gradual taking over of actions that lead to fear of failure and a reduction of complexity. Supporting the memory of the person with dementia requires tact on the part of the caregiver. Sometimes the person with dementia will appreciate this; other times, he will hold onto his own reality. In this phase, it is pointless to enter into discussion about facts or words. This makes the person with dementia feel corrected and patronized.
Experiencing Security and Trust
Experiencing Connectedness
Making contact with people in the wandering Ego-experience phase is often still possible. People in this phase take the initiative to make contact. If the reaction is positive, a reciprocity and interaction of feelings develop. During this phase, the person can make very apt remarks and does not let conventions limit him anymore. Word finding problems do not stop him from having conversations. The discussion partner only helps to keep the conversation on track and offers words, draws conclusions, or summarizes what has been discussed (Feil 1989a, b, 1992). In this, the partner needs to be both empathic and prothetic.
Experiencing Appreciation
For people in this phase, life themes and losses play an important part in their experience of reality. These themes are discussed individually as well as in groups. This may bring about a sense of (delayed) validation, understanding, compensation, or satisfaction. Whether the person experiences his reality positively or negatively depends to a great extent on the person and his life history. If someone has not built up a positive self-perception during his life and has known few good relationships, the behavior in this phase can be difficult to manage.
Experiencing Affirmation and Validation
The perception of the own identity becomes fragmented due to gaps in the memory. Caregivers can validate the feeling of identity of the person with dementia by addressing him in his identity and by incorporating, whenever possible, satisfying activities from the past into his current life in the nursing home (e.g., helping with the dishes, folding the laundry, polishing the silver or brass). In general, this will make the dementing person feel appreciated. Some caution is required, however. An excessive appeal on who one used to be, what one was able to do, or what brought pleasure in the past can also be very confrontational in the current situation.
4.1.2.6 Care in the Phase of Hidden Ego-Experience
Accepting Dependence
During this phase, the person is totally dependent on others. The person with dementia is likely to accept this more easily if he trusts those others. Caregivers need to build up this trust, e.g., by always carrying out care actions in the same way and by making themselves recognizable by means of the tone of voice, type of greeting, and physical contact. Despite the fact that one is dependent, experiencing the freedom to choose is still very important. Selecting the moments and ways in which choices are offered to the person with dementia requires creativity and tact.
Experiencing Connectedness
In this phase, the person depends on the initiatives of others for contact. Many people in this stage of dementia are, however, still open to liveliness, cheerfulness, humor, music, and movement (Buckwalter et al. 1995). Caregivers need to be alert to this in their contacts and in offering activities. Mirroring body posture and movements may help to tune oneself to the feelings of the person with dementia and invite him to share those feelings. Sometimes, eye contact helps to make the person with dementia experience closeness and intimacy; sometimes, sitting with him for a moment is enough. To the person with dementia, the person who is so close to him may symbolize someone from his life history. Who this is exactly is irrelevant. The verbal technique used is the technique of ambiguity (Feil 1992): “Isn’t that nice?” “Is it that bad?.” The person with dementia feels understood. Experiencing appreciation: contact opportunities should be sought in the physical and sensory experience. The caregiver needs to show respect, warmth, and understanding.
Experiencing Affirmation and Validation
Although their sense of who they are is vague for people in the hidden Ego-experience, they do prove sensitive to an appeal to their identity, for example, by reminiscing together with the person with dementia with the aid of old photographs or familiar objects about positive events in his past. Awareness of the life history of the resident with dementia is therefore important.
4.1.2.7 Care in the Phase of Sunken Ego-Experience
Accepting Dependence and Control
People in the phase of sunken Ego-experience were once thought to be in a vegetative stage. The care would therefore be limited to the body. In the integrated emotion-oriented care, the daily care is also used to nourish the person with dementia and provide him with pleasant sensations. People with high muscle tone and contractures are easier to help with principles from, e.g., the PDL approach and basal stimulation, and they respond well to relaxing massage. The person with dementia responds primarily to physical and sensory stimuli. These can be offered, for example, through bodily experiences like massage and warm bathing, sensory stimulation, aroma therapy, and music.
4.1.3 How Integrated Emotion-Oriented Care Can Influence Adaptation
In the adaptation-coping model, the seven adaptive tasks are considered as important aspects of cognitive, emotional, and social adaptation in dementia. Starting from the “coping” perspective, we examine for each of the adaptive tasks how they can cause behavior and mood problems or disruptions in the daily functioning of people with dementia. Subsequently, we describe how integrated emotion-oriented care attempts to prevent, reduce, or eliminate these disruptions and problems.
4.1.3.1 Integrated Emotion-Oriented Care and Cognitive Adaptation
Coping with the Own Invalidity
A dementia syndrome, as stated before, is characterized primarily by cognitive disabilities. Accepting and coping with these disabilities in daily life requires constant adaptation from the person with dementia.
Adaptation may take place, for example, by developing skills that compensate for the disabilities. Due to the presence of cognitive impairments and the ongoing deterioration, a general assumption is that people with dementia are able to adapt or, as Sacks (2012) puts it, “to reassemble their world,” only to a very limited extent.
Various authors point out that the behavior of people with dementia proves that they find ways of coping with the consequences of their illness (Dröes 1991; Cotrell and Lein 1993; Clare 2009; Dirkse et al. 2011; de Werd et al. 2013). Dröes (1991) mentions four coping strategies that appear to be used with regard to “coping with the own invalidity”: obsessive and compulsive behavior, taking the shape of, e.g., extreme neatness and the urge to walk; denial, as manifested in confabulation and the denial of cognitive disabilities; avoidance, which refers to avoiding test situations; and regression (reduction of interests and initiative, increased egocentricity, dependent behavior, and motor passivity) (Dröes 1991; Clare 2002, 2003; De Boer 2011; Steeman 2013).
According to Dröes, the regressive coping strategy in particular has negative side effects for the person with dementia and his environment. If taken to extremes, this coping strategy can be accompanied by insecurity, suspicion, disruptive behavior, and “excess disabilities” (this refers to the fact that the person with dementia exhibits more disability in his daily life function than one would expect on the basis of his abilities; Cohen 1986; Dröes 1991). She feels that activating and supporting these people may contribute to a reduction of these accompanying symptoms, partly because the person with dementia experiences which possibilities and skills he still has through activities and partly because he learns to trust people in his environment who will help out when necessary.
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