November: Be Thankful! Celebrate your residents and their caregivers, it’s National Alzheimer’s Awareness Month & National Caregiver Month

In the spirit of the month, I am getting on my soapbox and talking about the role of the SLP as a primary caregiver to residents with dementia and dysphagia.  When our resident stops eating, what do we do? What do we recommend when we do a FEES and see that nearly all consistencies are aspirated?  How do we document these recommendations?
To tube or not to tube is not our decision to make, but it is within our scope to provide education to residents, their caregivers, and our facility staff.  ASHA provides guidance to the SLP through Frequently Asked Questions About Alternative Nutrition and Hydration, a document created by Special Interest Group 13, Swallowing and Swallowing Disorders.  Click here to visit ASHA’s resource page for end of life issues in SLP.
There are references galore that instruct residents, families, and other professionals to use the support of the interdisciplinary team to assist in decision making, and most importantly in this process, to be guided by the facts.  Three stellar position papers are linked below:
The American Geriatrics Society presented an updated Feeding Tubes in Advanced Dementia Position Statement  in July of this year.  It gives strong rationales for its position that feeding tubes are not recommended for older adults with advanced dementia, and that careful oral (hand) feeding should be offered because it is “at least as good as tube feeding for the outcomes of death, aspiration pneumonia, functional status, and comfort.”
From the Alzheimer’s Association, 

be shared with a resident’s decision maker and other family members, as well as other professionals.  It emphasizes the benefits of assisted oral feeding over a PEG, and discusses the importance of advanced directives planning for residents with dementia.  

The Position of the Academy of Nutrition and Dietetics: Ethical and Legal Issues in Feeding and Hydration discusses the importance of a supportive interdisciplinary effort using a culturally respectful approach to support families and caregivers through their decision making process.  It emphasizes the individual’s “right to request or withhold nutrition or hydration as medical treatment.”

 

It is our professional and ethical responsibility, and well within our scope of practice as SLPs working with long-term care residents, to document not only what is safest for a resident but to additionally comment on (1) the resident’s prognosis for developing aspiration complications and (2) quality of life considerations.  Dementia is commonly considered in the research to be a terminal illness, and as such, it is appropriate for an SLP to explain in documentation that while there is risk of prandial aspiration with oral feedings, that the placement of a PEG tube will further increase the resident’s risk of developing complications like aspiration pneumonia.  Furthermore, nonoral nutrition is shown in the research to have no positive impact on quality of life in residents with dementia.  In a time where the focus is on evidence-based practice, it is important to be well-versed in the current research about PEG tubes and dementia, and to be able to fluently discuss both the pros and cons with residents, their caregivers, and other professionals.

SLPs have the power to be the voice of reason when PEG tubes are discussed for residents with dementia.  Rely on the research to guide your professional judgment and step up in the discussion for your residents and for their dignity.

Stated with love for quality of life & liberalized diets, Katrina Woodward, MS, CCC-SLP SDX Scope Squad Leader & Certified Dementia Practitioner

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