04/12/2019. Learning Objectives. An Approach to End of Life Conversations in Dementia Care for Speech-Language Pathologists

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1 1 An Approach to End of Life Conversations in Dementia Care for Speech-Language Emily Hornback, MS, CCC-SLP, BCS-S 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. Communication Sciences & Disorders

2 2 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 Communication Sciences & Disorders US: 5.7 million Worldwide: 50 million 2030: 82 million 2050: 152 million Prevalence 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 Communication Sciences & Disorders What does it look like to die from dementia? Communication Sciences & Disorders

3 3 Assessment Framework 1. Clinical Evaluation of Swallow Instrumental Assessment, if indicated 2. Cognitive Staging 3. Education and Counseling Communication Sciences & Disorders 1. Clinical Evaluation of Swallow 1. Oral Care Oral Health Assessment Tool (OHAT) 2. Oral Mech Exam 3. PO trials 4. Behavioral Feeding Assessment Communication Sciences & Disorders Clinical Evaluation of Swallow Dementia Behavioral/Feeding Assessment Tools Dementia Mealtime Assessment Tool (DMAT) Edinburg Feeding Evaluation in Dementia Questionnaire (EdFED-Q) Communication Sciences & Disorders

4 4 Communication Sciences & Disorders Communication Sciences & Disorders Communication Sciences & Disorders

5 5 2. Cognitive Staging Global Deterioration Scale (GDS) Functional Assessment Staging Tool (FAST) Brief Cognitive Rating Scale (BCRS) Allen Cognitive Levels (ACL) Communication Sciences & Disorders Communication Sciences & Disorders Communication Sciences & Disorders

6 6 Reisberg, B. Functional Assessment Staging (FAST). Psychopharmacology Bulletin, 1988; 24: Communication Sciences & Disorders 3. Counseling and Education Current functioning and future expectations Involvement of interdisciplinary team members Communication Sciences & Disorders

7 7 S: Setting P: Perception I: Invitation K: Knowledge E: Empathy S: Strategy SPIKES Protocol Communication Sciences & Disorders Education Anticipation Preparation Communication Sciences & Disorders Goals of Treatment Mitigate risk of decline Medical Nutritional Quality of life Increase independence Communication Sciences & Disorders

8 8 Predictors of Pneumonia in Nursing Homes Dependent for feeding Mechanically altered diet Weight loss Tube fed Suction use Dysphagia Poor Pulmonary Clearance (bedfast, dependence in bed, dependence in locomotion, COPD, CHF, & CVA) 8. Depressed Immune System (Weight Loss, UTIs, and age) Communication Sciences & Disorders Indirect Interventions Modification: Environmental Auditory Tactile (include senses) Visual Diet Communication Sciences & Disorders Direct Interventions Spaced Retrieval Training Adaptive Equipment Training in hand-over-hand assistance Communication Sciences & Disorders

9 9 (Chung, 2018) Communication Sciences & Disorders GDS: 7 Cognitive-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 Communication Sciences & Disorders When Anticipation Becomes Reality weight loss severe dysphagia dehydration wounds aspiration pneumonia Communication Sciences & Disorders

10 10 Next Steps Discussion with interdisciplinary team members. Family meeting for education and discussion regarding goals of care. Comfort Care and/or Hospice Services Alternative Method of Nutrition Communication Sciences & Disorders 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. Communication Sciences & Disorders Case Study: Betty GDS = 6-7 Cognitive/behavioral signs: texture aversion, oral acceptance deficit Oral signs: inability to masticate or form bolus. Communication Sciences & Disorders

11 11 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. Communication Sciences & Disorders 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. Communication Sciences & Disorders 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. Communication Sciences & Disorders

12 12 References Alzheimer s Association. (2018) Alzheimer's disease facts and figures. Retrieved from 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), Retrieved from 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), Retrieved from 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. Communication Sciences & Disorders References Camp, 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), Retrieved from Chang, C., & Roberts, B. (2008). Feeding difficulty in older adults with dementia. Journal of Clinical Nursing, 17, Retrieved from Chung, C. (2018). What to expect in late stage dementia. Very Well Health. Digital print. Retrieved from 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), Langmore, S.E., Sharupski, K.A., Park, P.S., & Fries B.E. (2002). Predictors of aspiration pneumonia in nursing home residents. Dysphagia, 17(4), Retrieved from Communication Sciences & Disorders References Lopez, 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, Martin, L. (2019). Dementia mealtime assessment tool (DMAT). Retrieved from Reisberg, B. Functional assessment staging (FAST) (1988). Psychopharmacology Bulletin, 24, 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, 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), Retrieved from mentiascale pdf Communication Sciences & Disorders

13 13 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), 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), World Health Organization. (2017). Dementia: Fact sheet. Retrieved from Communication Sciences & Disorders