End of Life in Dementia Care - NCSHLA of Life in Dementia Care .pdf4.Behavioral Feeding Assessment...

04/12/2019

An Approach to End of Life Conversations in Dementia Care for Speech-Language Pathologists

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An Approach to End of Life Conversations in Dementia Care

for Speech-Language Pathologists

Emily Hornback, MS, CCC-SLP, BCS-S

04/12/2019 Communication Sciences & Disorders

Learning Objectives

1. Increase knowledge of cognitive staging of dementia and correlation to dysphagia.

2. Identify behavioral indicators that may predict cognitive dysphagia and/or nutritional concerns.

3. Present a framework in order to increase knowledge and patient expectations without prior experience.


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Dementia

• Acquired brain disease characterized by a progressive decline in cognitive domains including:– Attention– Linguistic expression and comprehension– Executive functioning skills– Learning and memory– Visuospatial Skills– Memory


Prevalence

• US: 5.7 million• Worldwide: 50 million• 2030: 82 million• 2050: 152 million

• Alzheimer’s accounts for 60-80% of cases• 1 in 10 Americans 65 + has AD• 1 in 3 elderly people will die from Alzheimer’s

disease or another form of dementia


What does it look like to die from dementia?


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Assessment Framework


1. Clinical Evaluation of Swallow• Instrumental Assessment, if indicated

2.Cognitive Staging3.Education and Counseling

1. Clinical Evaluation of Swallow

1. Oral Care– Oral Health Assessment Tool (OHAT)

2. Oral Mech Exam3. PO trials4. Behavioral Feeding Assessment


Clinical Evaluation of Swallow

• Dementia Behavioral/Feeding Assessment Tools–Dementia Mealtime Assessment Tool (DMAT)– Edinburg Feeding Evaluation in Dementia

Questionnaire (EdFED-Q)


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2. Cognitive Staging

• Global Deterioration Scale (GDS)• Functional Assessment Staging Tool (FAST)• Brief Cognitive Rating Scale (BCRS)• Allen Cognitive Levels (ACL)




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Reisberg, B. Functional Assessment Staging (FAST). Psychopharmacology Bulletin, 1988; 24:653-659.

3. Counseling and Education

• Current functioning and future expectations• Involvement of interdisciplinary team

members


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SPIKES Protocol

• S: Setting• P: Perception• I: Invitation• K: Knowledge• E: Empathy• S: Strategy



Education Anticipation Preparation

Goals of Treatment

• Mitigate risk of decline–Medical–Nutritional –Quality of life

• Increase independence


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Predictors of Pneumonia in Nursing Homes

1. Dependent for feeding 2. Mechanically altered diet3. Weight loss4. Tube fed5. Suction use6. Dysphagia 7. Poor Pulmonary Clearance (bedfast, dependence

in bed, dependence in locomotion, COPD, CHF, & CVA)

8. Depressed Immune System (Weight Loss, UTIs, and age)


Indirect Interventions

• Modification:– Environmental–Auditory – Tactile (include senses)–Visual–Diet


Direct Interventions

• Spaced Retrieval Training• Adaptive Equipment• Training in hand-over-hand assistance


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(Chung, 2018)

GDS: 7Cognitive-based dysphagia

• Dependence for oral care • Dependence for feeding• Oral apraxia• Oral acceptance deficits• Impaired attention for chewing/swallowing• Confused feeding pattern attempts• Unable to sustain nutrition and hydration needs by

mouth


When Anticipation Becomes Reality


weight loss

dehydration

aspiration pneumonia

wounds

severe dysphagia

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Next Steps

• Discussion with interdisciplinary team members.

• Family meeting for education and discussion regarding goals of care.


Alternative Method of NutritionComfort Care and/or Hospice Services

Case Study: Betty

• Betty is a 92 year old female admitted to short term rehab after being hospitalized due to sepsis secondary to UTI.

• Prior to hospitalization, Betty was living at a standalone ALF in “memory unit”. Betty has dementia and is primarily nonverbal and requires total assistance with all ADLs.

• Betty has had a 25 lb. weight loss in the last year.• Betty was admitted to short term rehab on a

regular/thin diet.


Case Study: Betty

• GDS = 6-7• Cognitive/behavioral signs: texture aversion,

oral acceptance deficit• Oral signs: inability to masticate or form bolus.


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Case Study: Johnny

• Johnny was admitted to short term rehabilitation after being hospitalized for a right hip fracture. Johnny underwent a total hip replacement.

• Johnny had a history of Alzheimer’s disease to which wife reported that he required assistance with bathing, walking, and was incontinent of bowel and bladder. Johnny was previously able to feed himself. Johnny usually ate softer foods at home like mashed potatoes and ground meats with gravy. Johnny was not oriented to time and did not recognize grandchildren.


Case Study: Johnny

• Prior GDS = 6• Upon evaluation, Johnny is nonverbal and unable

to self-feed. Johnny is positioned in a Broda chair for support.

• Oral dysphagia signs: prolonged mastication and inability to form cohesive bolus.

• Cognitive dysphagia signs: oral acceptance deficit, poor attention for swallowing and chewing, prolonged meal time.


Case Study: Johnny• Education and counseling• Therapeutic interventions put into place including diet

modification and education and training of staff and family.

• 2 weeks later… patient became dehydrated and experienced increased difficulty swallowing.– Increased clinical signs of pharyngeal dysphagia including

coughing and choking with meals and severe apraxia of swallow.

– No improvements in cognition• Interdisciplinary team alerted by SLP to define goals of

care.


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ReferencesAlzheimer’s Association. (2018). 2018 Alzheimer's disease facts and figures. Retrieved from

https://www.alz.org/alzheimers-dementia/facts-figures

Alzheimer’s Disease International. (2015). World Alzheimer Report 2015: The global impact of dementia. London, United Kingdom: Alzheimer’s Disease International.

Amella, E. J. (2002). Resistance at mealtimes for persons with dementia. Journal of Nutrition, Health & Aging, 6(2), 117–122. Retrieved from

https://www.researchgate.net/publication/11221246_Resistance_at_mealtimes_for_persons_with_

dementia

Baile, W. F., Buckman, R., Lenzi, R., Glober, G., Beale, E. A., & Kudelka, A. P. (2000). SPIKES a

six-step protocol for delivering bad news: application to the patient with cancer. The Oncologist, 5(4), 302-311. Retrieved from http://theoncologist.alphamedpress.org/content/5/4/302.long

Bayles, K., McCullough, K., & Tomoeda, C. (2020). Cognitive-communication disorders of MCI and dementia: Definition, assessment, and clinical management 3rd edition. San Diego, CA:

Plural Publishing, Inc.


ReferencesCamp, C., Antenucci, V., Bush, J., Slominski, T. (2012). Using spaced retrieval training to

effectively treat dysphagia in clients with dementia. Perspectives on Swallowing and Swallowing Disorders, 21(3), 96-104. Retrieved from https://pubs.asha.org/doi/10.1044/sasd21.3.96

Chang, C., & Roberts, B. (2008). Feeding difficulty in older adults with dementia. Journal of Clinical Nursing, 17, 2266–2274. Retrieved from

https://onlinelibrary.wiley.com/doi/epdf/10.1111/j.1365-2702.2007.02275.x

Chung, C. (2018). What to expect in late stage dementia. Very Well Health. Digital print.

Retrieved from https://www.verywellhealth.com/what-is-it-like-to-die-of-dementia-1132331

Langmore, S.E., Terpenning, M. S., Schork, A., Chen, Y., Murray, J. T., Lopatin, D., & Loesche, W. J. (1998). Predictors of aspiration pneumonia: How important is dysphagia? Dysphagia, 13(2), 69–81.

Langmore, S.E., Sharupski, K.A., Park, P.S., & Fries B.E. (2002). Predictors of aspiration pneumonia in nursing home residents. Dysphagia, 17(4), 298-307. Retrieved from https://link.springer.com/article/10.1007%2Fs00455-002-0072-5


ReferencesLopez, R. P., Amella, E. J., Strumpf, N. E., Teno, J. M., & Mitchell, S. L. (2010). The influence of nursing home culture on the use of feeding tubes. Archives of Internal Medicine, 170, 83–88.

Martin, L. (2019). Dementia mealtime assessment tool (DMAT). Retrieved from https://thedmat.com/

Reisberg, B. Functional assessment staging (FAST) (1988). Psychopharmacology Bulletin, 24, 653-659.

Reisberg, B., Ferris, S.H., de Leon, M.J., and Crook, T. (1982). The global deterioration scale for assessment of primary degenerative dementia. American Journal of Psychiatry, 139, 1136-1139.

Stockdell, R., Amella, E. (2008). The Edinburg feeding evaluation in dementia scale: Determining how much help people need at mealtime. American Journal of Nursing,108(8), 46-54. Retrieved from https://alliedhealth.ceconnection.com/files/HowtoTryThisTheEdinburghFeedingEvaluationinDementiaScale-1454601642978.pdf


https://www.alz.org/alzheimers-dementia/facts-figures

https://www.researchgate.net/publication/11221246_Resistance_at_mealtimes_for_persons_with_dementia

http://theoncologist.alphamedpress.org/content/5/4/302.long

https://pubs.asha.org/doi/10.1044/sasd21.3.96

https://onlinelibrary.wiley.com/doi/epdf/10.1111/j.1365-2702.2007.02275.x

https://www.verywellhealth.com/what-is-it-like-to-die-of-dementia-1132331

https://link.springer.com/article/10.1007%2Fs00455-002-0072-5

https://thedmat.com/

https://alliedhealth.ceconnection.com/files/HowtoTryThisTheEdinburghFeedingEvaluationinDementiaScale-1454601642978.pdf

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References

Tristani, M. (2016). Swallowing, cognition, dignity: A clinical pathway for dysphagia management in persons with dementia. ASHA Dysphagia in Older Adults Live Conference. Online.

Voyzey G. A. (2010). Feeding and swallowing strategies for individuals with dementia. Perspectives on Gerontology, 15(2), 48-53.

Watson, R., Macdonald, J., & Mccready, T. (2001). The Edinburgh Feeding Evaluation in Dementia Scale #2 (EdGES #2): Inter- and intra-rater reliability. Clinical Effectiveness in Nursing, 5(4), 184–186.

World Health Organization. (2017). Dementia: Fact sheet. Retrieved from http://www.who.int/mediacentre/factsheets/fs362/en/


http://www.who.int/mediacentre/factsheets/fs362/en/

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