A REALISTIC PERSPECTIVE: Your Responsibilities for Dementia Patients

BY: Karlene Stefanakos, M.A., CCC-SLP on Thursday, 10 February 2011. Posted in All, Dementia, Dysphagia, Speech Pathology

Through my travels and as I read my emails, I am uncomfortable with the lack of knowledge that SLPs have regarding the laws that govern their responsibilities for evaluation and functional maintenance programs required for the dementia patients. Even if SLP’s have “some” knowledge of their “job” with the dementia patient, a fully implemented program is not instituted within the facility. So here’s a brief synopsis of the SLP’s responsibilities under the law.

Firstly, the SLP should understand that all dementias are not alike. The list is long and the characteristics are different in each one. Dementias with the highest incidence rates are Alzheimer’s disease, vascular dementia, Lewy Body Disease, Parkinson’s Dementia, Pick’s disease, Wernicke-Korsakoff’s Encephalopathy, and Huntington’s Disease which are the primary dementias, and which are irreversible. (This list does not include the reversible dementias.) Under the law, Transmittal No. 46 (published October 1981, and effective November 1981) states that, “After initial evaluation of the extent of the disorder or illness, if the restoration potential is judged insignificant, or if after a reasonable period of trial, the patient’s response is judged insignificant, or at a plateau, an appropriate functional maintenance program may be established.  The specialized knowledge of a qualified speech pathologist may be required if the treatment aim of the physician is to be achieved. What are the aims of the physician? Under OBRA Guideline law enacted on December 22, 1987, it became the responsibility of the physician and all professional caregivers to provide  “services intended to enhance those residual functional abilities identified during an evaluation performed by rehabilitation professionals.” This law set the federal legal focus on “Maintaining the resident’s highest functional level which promotes the greatest quality of life.” (Citation F-tag 240)

Further, ASHA, published this statement in 1988 stating:

“Increasing involvement in the evaluation and management of the patient with Alzheimer’s disease and related disorders through such assessment of level of communication skills, control of the potential confounding effects of unrecognized communication disorders on the diagnosis of dementia, interdisciplinary participation in program development, provision of specific treatment programs designed to facilitate and maintain functional communication for as long as possible, and assistance to families in understanding communication breakdown, specific deficits, and needs.”

Additionally, presently ASHA has online an additional Position Statement entitled: The Roles of Speech-Language Pathologists Working with Individuals with Dementia-Based Communication Disorders, which every SLP working within a geriatric population should read.

However, communication is only half of the SLP’s responsibilities when caring for the dementia patient. Dysphagia has a high incidence rate within this population also. Therefore, the SLP’s scope of practice regarding the dementia patient may indeed require two care plans in the eyes of the law.

Standardized tests are required in the evaluation of the dementia patient in the areas of communication. This baseline data is required when the patient enters into a care facility. When residual/spared communication skills are identified on a standardized test such as the ABCD, FLCI, the Global Deterioration Scales, FROMJE, BCRS, etc., then the SLP is able to comprehend what communication skills remain for the patient’s usage with family, staff, and friends within their environment. The test results are written into a Care Plan and training begins with nursing staff. Training involves informing nursing about test results and the patterns of comprehension and communication the patient is able to utilize to participate effectively within their environment.

It is in this manner that the patient’s effectiveness is improved within their residential environment. No longer are multi-choice questions asked by staff when the patient can only reply effectively from a field of two choices. No longer are 7-9 words statements made when the patient can only understand concrete 2-3 words sentences. The world works once again for the dementia patient, and their anxiety decreases in their daily routines. Professional evaluation of the communicating mind of the dementia patient and utilization of this knowledge in a “functional” communication maintenance program decreases catastrophic events, enhances the communication skills of the patient, and calms the general atmosphere of the facility. The evaluation, development of an FMP program in communication, nurse training, setting up of a monitoring system (Q.A. – quarterly monitoring) establishes within the facility an effective communication protocol/program.

With regard to dysphagia, in a degenerative disease such as any of the primary dementias, the SLP should understand that their primary responsibility under the law is to make absolutely sure that the patient is safe in all feeding situations. In the evaluation of the dementia patient, the speech pathologist must realize their role over time will be to chart the destruction of a very insidious disease as it impacts mechanisms of the swallow. The speech pathologist will be called upon many times over the progression of the disease to evaluate and reinstate the “safety margins” for those patients who relentlessly lose their safety margins and capabilities in swallowing. The SLP’s goal, like Medicare’s #1 goal, becomes securing absolute safety for the resident during swallowing and meal ingestion. This requires a clear knowledge of the organic mechanisms of the disorder itself, a clear knowledge of your legal responsibilities under the law, and a clear knowledge of management techniques, which are both environmentally based as well as neuro-physiologically based.

Symptomatic evaluations, which delineate only symptoms, provide the SLP with no information to develop an appropriate functional treatment plan for the dementia patient. For example, MBS evaluation results which indicate a patient symptom of “premature lingual spillage into the valleculae” does not inform the treating SLP if the patient has a lesion of the sensory pathway of CN IX resulting in the brainstem receiving no sensory information that the bolus is present on the posterior 1/3 of the tongue. Or, perhaps there is a lesion on the autonomic line of CN IX affecting the production of serous saliva from the parotid glands, which eliminates timely transfer of the bolus into the pharynx. Or, perhaps there is a lesion on CN XII, which motorically affects the firing of the tongue base retraction reflex eliminating fast propulsion of the bolus into the pharynx. A dysphagia evaluation that does not provide knowledge of the organic site of lesion, which then delineates specific mechanisms of dysfunction, provides the treating SLP with nowhere to go in developing a treatment strategy. Or worse, the SLP institutes treatment strategies that are inappropriate, ineffective, and unnecessarily costly. As in the other fields of medicine, all diagnostics must be etiologically based in order to develop an appropriate treatment plan. In the case of the dementia patient, an organic swallow evaluation is primary to understanding the multiple systems of the swallow that have been destroyed, and when placement of the PEG tube, and/or activation of the Living Will is appropriate.

The management of a dementia patient requires the melding of the SLP’s knowledge bases in dementia deterioration patterns, communication systems characteristic of each dementia, and the deterioration of the organic systems of the swallow as the patient proceeds through a passage of loss of self. It is a terrible journey for patient and family, and I would hope that we as gentle and knowledgeable professionals can ease this journey for them.

A final note, regarding our competency in the area of dementia. We can only be a good as our training which we receive in our graduate programs.  Since 1988, when ASHA published its “Position Paper” regarding the dementia competencies that SLPs should possess, there has been no standardization of curriculum in dementia throughout the graduate programs across the nation. This is educational malpractice against the students who will be faced with legal confrontation on their skills in the area of dementia as state and federal investigative teams review evaluations and care plans of dementia patients for the purpose of restoring funds to the Medicare coffers. Denials are increasing, and dementia is the dominant population now growing larger in the secondary facilities. If you work in the geriatric, demented population, you need to learn your craft quickly.

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