Initiating Person Centered Care


Dementia care mapping is a new method to evaluate and improve the care given to persons with dementia in formal care settings. Dementia care mapping (DCM) strives to deliver clear and reliable information about the care setting from the viewpoint of the individual with dementia. It involves making detailed observations and recording them. The result is a summary of how each client fared, how care was delivered, the style of care given and an overall view of the general quality of care. It is an effective tool to measure person-centered care.

Person centered care is an abilities based approach to fulfill the social, psychological and physical needs of a person with Alzheimer's disease. The approach moves beyond disease-focused thinking that stresses disabilities and personal deficits, to ability-based care. Even though the latest developments in bio-medical research are fascinating, they have little impact on individualized care in adult day services or other formal care settings.

We have explored but need to reiterate the importance of meeting the core needs of individuals with dementia. This is an essential element of person centered care. The needs are love (unconditional acceptance), comfort (meeting basic physiological, emotional and pain management needs), attachment (feeling psychologically close to another person), occupation (having purpose in daily life), and inclusion (feeling connected to someone or belonging). When care plans are written that address these core needs, behaviors can be transformed from problematic to acceptable in a congregate setting.

As we remember all behavior is an attempt to communicate on the part of the person with dementia, it changes our perceptions as to "Whose problem is it?" It is our responsibility as caregivers to attempt to interpret the behavior and its underlying meaning. We do this by helping to sustain that person's "personhood". Personhood is essentially social and refers to the status and respect bestowed by others. We guarantee a participant's personhood by attending to their core needs and supporting them so they can achieve a sense of well being. A sense of well being is easily undermined in a person with dementia when they are treated as objects rather than people. You say you would never treat them that way. When was the last time you moved a participant in a wheelchair without first notifying her of your intent? Or you spoke of a participant in his presence as if he were not there? How about asking a co-worker to hand you a "bib" rather than a "clothing protector"?...a "diaper" rather than an "incontinence aid"? How easily we denigrate a person's dignity with our words and actions. We never or rarely act this way with malicious intent but, it usually happens because we get in a hurry or benignly neglect to monitor our conversations or actions.

Do we have the right to say we are treating a person with dignity and respect and tell them an untruth or lie? Is there, at some level, a part of our participant that feels your disrespect or interprets your disrespect when you blatantly lie to them to relieve their anxiety (our usual justification for such actions)? Is there not a better way to relieve their anxieties? For years we have been taught and have taught others "therapeutic fibbing". This new approach of person centered care is sparking a national debate around these issues. By examining our care practices, how can we allay a person's fears with truthful and more sensitive interventions? 

This charges us again to look at the root cause of the behavior. We do not ignore the participant's anxiety but learn new responses to it. Take for example the lady who is at your front door saying or shouting, " I have to go home now. My mother is waiting and will be mad if I'm not home." In the past, a typical type of response may have been, "I talked to your mother and she knows you are here. She says it is OK to be here." Does our lady realize at some level that we are lying? Person centered care research suggests that she does. What if we respond with, "You must really miss (or love) your mother. Tell me about her."? Subtle? Yes, but respectful and beginning to explore the meaning behind the behavior. Is this lady hungry? Cold? Trying to find a bathroom? Feeling excluded? Needing comfort?...on and on as we respond to the emotion rather than her actual words.

What impact do our own words have on our actions and thoughts? When we call someone "sweetie" or "honey", are we unconsciously treating them as if they are children, further eroding their desperate attempt to be viewed as an adult worthy of attention, inclusion, and once again, respect? Other words are hurtful too. Describing the person with Alzheimer's disease as "the victim", "sufferer" or describing the disease process as a "never ending funeral", "the long goodbye", and using other popular, sensationalistic terms can be devastating to the person experiencing the disease. Where, in these terms, is the human being with whom we are care-partnering? They are alive and capable of receiving and giving affection. 

In David Snowden's book, Living With Grace, the nuns' story describes how well the nuns function, even with severe dementia, when surrounded by affectionate acceptance and respect. He further describes how the nuns retain a sense of self and purpose with the thoughtful assistance of the caregivers. This leads us to look at other terms and how demeaning some labels become. Would you like to be known as the "person with the disability of dementia" or the "demented participant", "the shell", "vegetable", "spitter", "wetter", "wanderer", or other descriptive terms which dehumanize and devalue the very person you profess to care for with respect and dignity. What if we change our terms of "pacer" to "energetic"? Fazio, Seman and Stansell in their book, Rethinking Alzheimer's Care, remind us, "as words change, so do perceptions". For example, when the weather forecast tells us the day will be mostly cloudy, we anticipate a grim day and plan accordingly but if predicted as "partly sunny", (rather than "mostly cloudy"), we interpret the situation differently. We include this description because we have found this example to be particularly eye -opening for staff as it is brilliant in its simplicity.

In adult day services, as in no other formal care services, we have the venue or milieu to change our "culture of care". We are fortunate to work in a setting that is not so heavily regulated that we cannot change our way of writing care plans or more easily initiate new practices such as abilities-based programming. We invite you to explore the formal curriculum or processes of person centered care and discover, as we have, that there is a better way of providing care... a way that inspires caregivers to use their creativity to enhance the lives of the people they care for.