An I-Thou Approach to Dementia Care: Engaging With Rather Than Doing To

Transcription

1 An I-Thou Approach to Dementia Care: Engaging With Rather Than Doing To Steven R. Sabat Professor Emeritus of Psychology Georgetown University Washington, D.C., U.S.A.

2 Martin Buber s Concept of I-Thou vs. I-It Relationships I-It: Detached, cool, abstract, keeping a safe distance from the other. Objective, task-oriented approach that defines competency quantitatively (how many tick-boxes were checked off, how many patients did you see and fulfill duties toward?) Nomenclature-driven, often considered professional comportment, telling patients what to do: Doing To I-Thou: Moving toward the other person, being open and vulnerable, spontaneous and personal, person-oriented, listening closely to what clients say, responding openly, not nomenclature-driven, competency not defined quantitatively but qualitatively in mutual satisfaction and trust and respect: Engaging With

3 Engaging With Whom? A person who has many mental and physical attributes past and present: Some are valued, sources of pride; others of embarrassment. Person s educational and vocational achievements, special talents and abilities, sense of humour (or lack thereof), moral, ethical, political, religious beliefs, may be central to his or her values and pride Present attributes include: Diagnosis of dementia, dysfunctions in explicit memory, problems with language functions (naming, recalling words, syntactical problems), apraxia (problems with organizing movement, dressing, left-right dysfunction), visual dysfunctions (agnosia-unable to identify objects and use them appropriately). ***Person might say, I don t feel like myself *** Repetition of previously asked questions that had been answered already. Awareness of and embarrassment about the above dysfunctions and taking action to avoid embarrassing situations (Mrs. K at Day Centre and Dr. M changing subject of conversation)

4 Engaging With Whom? (continued) Has problems with calculation, focusing attention (inhibiting sources of extraneous sensory events that distract) and awareness thereof: Dr. B in Day Centre office Exhibits BPSD: Basic Personal Signs of Distress or Behavioral and Psychological Signs of Distress rather than the Biomedical notion of Behavioral and Psychological Symptoms of Dementia. This is an extremely important distinction that is critical to I-Thou vs. I-It approaches. Is frustrated, upset, embarrassed about what s happening to him or her dysfunctions in cherished abilities, experiences guilt and loneliness. All of the above means that such persons are Semiotic Subjects: people whose actions are driven by the meaning of situations, who can evaluate and act intentionally based on the meaning of situations (Situated Embodied Agent in Julian Hughes s terms).

5 Intact Strengths of Person living with Dementia Can make new memories (Implicit memory systems) even if unable to recall details. Sensitive to the emotions and vulnerability of others. Can work to maintain self-respect and dignity (requires the ability to make meaning in situations and evaluate them). Can feel and show love for and gratitude toward others ( I am happy to love you. ) Can appreciate warmth, kindness, acceptance, and love from others. Wish not to be a burden to others. Need reassurance and compassion. Can display and appreciate humour. Can have spiritual experiences and retain religious perspectives

6 Intact Strengths Need to be appreciated for their virtues and forgiven for their foibles. Can be hurt by being ignored or treated as non-entities. Can act out of intention in meaningful ways socially. Can make adaptations to compensate for problems stemming from brain damage (Mr. L looking for his coat in Day Center wardrobe). Can recognize and remember the good intentions of others who try to understand, communicate, show kindness (e.g., The Top Guy ) Need to have choices and to act independently (e.g., Dr. B) Need to have purpose (Mr. H at Johns Hopkins clinic). Need to be listened to and heard. Can be creative via art, music, dance, and benefit therefrom (OMA program) and experience fulfillment.

7 Engaging with Whom: Social Persona/Identity The critical problem of Master Status and the Dynamics of Selfhood Master Status in Sociology: The social position that is the primary identifying characteristic of a person, that has exceptional importance for social identity, often shaping a person s life. It overrides all others in perceived importance. Dementia patient / Alzheimer s patient / Demented patient specifically all the dysfunctions involved can become a person s Master Status in the eyes of others and in the eyes of the diagnosed person as well. Patienthood as Master Status is the springboard to I-It relationships and Doing To rather than Engaging With and an I-Thou relationship. What must happen for this to occur? Reflect on the attributes possessed by persons with dementia: On what do people focus most and which attributes are ignored? What or whom is being treated? Is it a person with a multitude of attributes past and present? OR a patient with dysfunctions? Often, it is the latter. Are there solutions to this problem?

8 Reframe Master Status re Person s Attributes: Summary Recognize that people with dementia have a plethora of healthy, valued attributes in common with people not diagnosed. Emphasize those attributes while commiserating with person s appropriate reactions of distress to losses/dysfunctions, thereby Enhancing the person s feelings of self-worth, of being understood and heard, and sympathized/empathized with, avoiding focus on losses alone and winning the person s trust, providing a place where the person s tears are safe, while assuring that he or she is still appreciated for all the positive attributes remaining. Is this professional? Is this humane? Can one be both? One aspect of Engaging With is to recognize, honor, focus on and engage the person s valued attributes that are functional. But is this all that one has to do?

9 Co-Constructing Valued Social Personae Social personae (multiple for each of us) are co-constructed as is a ballroom dance. Each persona has a different behavioral pattern for different social relationships (devoted parent, loyal friend, loving spouse, authoritative supervisor, good neighbor, etc.) For person diagnosed with dementia: Personae may be confined to dementia patient if others focus mainly on dysfunctional attributes and diagnosis in sharp focus. Henry was a lawyer / I AM a lawyer. (e.g. Franzen s father on Thanksgiving, Franzen s belief, father s comment.) Interpretation of person s actions driven by narrative of pathology in line with diagnosis so that Righteous indignation becomes Irrational hostility, walking becomes wandering, I don t understand what you re saying becomes, You re confused.

10 Co-Constructing Valued Social Personae Person diagnosed with dementia is effectively prevented from being anything else, not because of dementia, but because of social treatment provided by others (including what Kitwood called, malignant social psychology ). Social rehabilitation is sadly required to avoid deepening depression and further losses. Rehab requires (a) knowing the person s life story wherever possible and showing interest therein, (b) providing person with authentic human interest and engagement so as to (c) coconstruct with the person a valued social persona (e.g. Dr. M and Dr. B as research collaborators, Gen. U as respected historian/serviceman, Mrs. F and Mr. B as fellow teachers, Mrs. R as valued helper/service oriented person.

11 Engaging With People with Dementia Requires attention to person s healthy, intact attributes De-emphasizing dysfunctional attributes Help in co-constructing valued Social Personae instead of that of dementia patient All of which means that this requires sensitive and healthy, authentic, interactions between people That do not ignore the dysfunctional realities but that do not ignore the healthy ones either. Must put nomenclature aside avoid interpreting actions within a pathology based narrative. Not everything a person does is a symptom of disease but may be a reaction to dysfunctional treatment and sadness about losses.

12 Engaging With People with Dementia Means Being vulnerable (e.g. How do you have the stomach for this? ) Attempting to make good moments, each of which could be the last moment, even if it means we don t do all the tick box tasks. Creating a genuine human and humane connection with a person who is trying with the tenacity of the damned (A.R. Luria) to do the best he or she can. Putting the tick box mentality aside in part and this means changing the culture of care from top-down and bottom up. What and whom are we caring for and about? That our own humanity is reflected in how we care for the most vulnerable human beings among us. That people living with dementia who are thus engaged can enjoy positive, life-giving moments and show a variety of abilities they were assumed to have lost.

13 A Teaching from Lisa Snyder, L.C.S.W., 14 May 2009 Not long ago, my social work intern, Frank, came back from one of his weekly visits with a nearly mute man with end-stage Alzheimer s in a nursing home. He dutifully reported to me the deficits the man exhibited and how he had recorded them in the chart notes as needed in order for Medicare to continue coverage. He was about to move on to his next case when I stopped him and asked him to tell me more about this man. He was stumped. I don t need to tell you my response, because you were speaking through me. Needless to say, we can fast forward to a few weeks later when my intern came in quite moved by his recent visit with this same man. He had learned more about his life and family history and had quietly sat with him discussing it during his visits and noticed that the man s expressions became a bit more animated. They had gone out to the activity room one week to listen to music and Frank talked a little with the man about the music and the origins of it at the breaks. At one point the man reached out and took Frank s hand with a tear in his eye. He was no longer a chart note of deficits. He was a human being being treated like one. Hospice staff had been noticing an improvement in this man in his alertness, his affect, and credited Frank with bringing some life to this soul.