What could we do in dementia care if we were not focused on problems and deficits, but focused on what the person can still do and wants to? Have we become so focused on what is wrong with the person that we forget who they are, who they can be?
I don’t know about you but if I am surrounded by people who love me and appreciate me for who I am I am a better person than if I am surrounded by people who are not interested in me or have misconceptions of me. What is it like for the person with dementia who maybe can’t use words to understand and communicate their own feelings and experience anymore?
Most ‘behavior management’ (don’t like that term anymore) is focused on what is wrong, the problem caused to others. Usually the person themselves is regarded as the problem by the time a professional is called in to ‘solve’ the problem for them. This loses sight of the person and who they are disappears under the weight of negativity, frustration and judgments about the person.
I suggest we may be better to go in a different direction. Let’s look to Appreciative Inquiry.
Appreciative Inquiry focuses on approaching organizational change from a standpoint that the organization is a “solution designed in its own time to meet a challenge or satisfy a need of society” (Cooperrider and Whitney, 2005). This approach focuses on what is working well and effective in organizations rather than on seeing the organization as a problem to be solved. In this way I think we can approach the individual person as a solution designed in its own time to meet a challenge or satisfy a need. This is indeed what the human brain is constantly trying to do. It is trying to work out how to survive, how to make sense of the massive inputs it receives from the world around it so that it can keep the person alive long enough to pass its genes onto another human being. The desire to stay alive is phenomenally strong in the human being.
As the human being faces the threat of diminishment by a condition that destroys the very organ that is designed to keep it alive, the human being goes into survival and responds to this by seeking out attachments, by fighting or fleeing, by behaving in ways that make perfect sense as efforts to ‘make sense’ of the confusing world and to simply survive.
Traditionally in modern dementia care we take a psychiatric approach in response to this range of actions that people engage in when threatened with annihilation. We call it a symptom of an illness (Behavioural and Psychological Symptoms of Dementia – BPSD) and medicalise the normal reaction into an abnormal sign of illness; and ‘disturbed’, or challenging’ or disruptive’ all of which says more about its effect on us and our perceptions of it than anything about the behaviour itself. We gather evidence of this problem and label it aggressive, wandering, repetitive, vocalising, mood swings, agitation, or attention seeking, or manipulative, or clinging. And then we medicate it away because if it is a symptom then medical solutions are called for. So we use psychotropics to modify the person so they don’t do these behaviours. The unfortunate side effects that we tolerate are sedation and confusion, dull emotions and slowness. But its a small price to pay for peace and quite, isn’t it?
Appreciative Inquiry uses 4Ds as a process: Discovery, Dream, Design, and Destiny. Lets look at each a little as they might be applied to an individual ‘behaviour management’ issue.
Discovery:We seek to understand the situation by engaging all stakeholders to articulate the strengths and best approaches to responding to this person. In this way the person can begin to come alive in our minds and the ‘problem” can diminish in our perceptions. What works? What is the best of what is and what has been in this person and our time with them? Let’s ask what is working in this person’s life right now that we want to maintain? What is going well? What are the threads or aspects of this person’s life that they and we want to maintain? What does the person say is going on for them, from their point of view? Rather than focus on the ‘problem behaviour’ let’s focus on the success this person has in functioning in the face of a condition that undermines their very confidence in their own perceptions and memory for reality.
Dream: What is it we want? What is the result we want here if this is what is working for the person and for us? What is this person calling us to do and be with them? What do they need from us?
Design: Create ‘possibility propositions’ of the ideal relationship with this person, articulating an ideal arrangement of people, routines, relationships that we think this person is capable of engaging in and drawing upon and magnifying the positives about the person to realise thsi ideal relationship and situation with them.
Destiny: Strengthen the affirmative capability of the situation, organisation, family, enabling it to build a hopeful and sustainable momentum for positive change and high performance of excellent human relationship.
As Cooperrider and Whitney state a crucial step in this process and centre of the process is affirmative topic choice. this is what will define and direct the process. If we remain focused on the topic as a problem for everyone we will ultimately see the person as a problem and not just what they are doing. However, if we can reframe the topic in an affirmative way the topic can become an agenda for relationship with that person, for improving their quality of life and an agenda for care actions and care planning.
Lets have a look at an example: Monique is refusing to come away from the door to the aged care home stating that she needs to go home to her mother who said she has to be home by dark or she will be in big trouble. She is packed and is not prepared to back away. Staff have been approaching her and trying to cajole, to persuade to lie to her, to bully her and most recently to threaten her and physically manhandle her in order to get her away from the door. She is not letting anyone get through the door until she gets through the door first. She doesn’t believe anyone and is firmly convinced that her view of things is correct and others are liars.
If we take an AI approach we begin with Discovery by asking what is going well in Monique’s life. What is working in her care? You might think that not much is working in her life right now and she may say the same thing. However, it is clear that she has a strong attachment if fearful to her mother. This is a positive. A child wants to please their mother by doing the right thing and right now she sees herself as a child needing to go home to satisfy her mother and so avoid trouble. Also a positive is that she has enough ego strength to resist the efforts of numerous cognitively intact people to maintain her stance. This is a positive. Her brain has not yet relinquished its ability to protect its own interests. What might be construed traditionally as resistiveness may be reframed as ego strength and capacity for relationship. We want to assist her to sustain these abilities.
Dream: We ask what we want. What is the desirable future state we want? We want the door way to be open and we want Monique to be contented and peaceful. Happy is too transient a state. Contentment may be more achievable and desirable. The other thing to do is ask what Monique wants. She clearly wants to leave in the short term. She also wants to see and be with her mother, to be attached or connected to her mother. She wants to be a good daughter, an obedient daughter with a satisfied mother who is not angry.
Design: We want to be able to create strong attachment relationships in which Monique feels safe to be angry and afraid and sad, where her emotions are acceptable and it is OK for her to be wanting her mother. We want to have people in our staff group who have the capacity to be unafraid of Monique’s rage and sadness at not being able to get what she wants and who are not overcome with fear at her rage and sadness, who can stand with her at the door and remain in relationship with her rather than pull her away. This may not heal the wound in Monique but it may contribute to a more peaceful life for her. This is a possibility proposition. It is an ideal and it is what we work toward achieving for Monique and for us.
Destiny: We work to select and training staff who have the personal capacities and motivation to achieve our goal of an emotionally robust staff group who can stand with people in their distress and empathise and be in relationships that are equal with enough peace and enough contentment.
Appreciative Inquiry can be a useful way to reframe the current medical model of ‘behaviour management’ and the symptomology of BPSD into a more humane and affirmative, healing and hopeful approach to life with dementia.