Guiding and Supporting Decision-Making for Individuals with Dementia:
Feeding, Swallowing, and Nutrition Considerations
Paula A. Sullivan, MS, CCC-SLP, BCS-S
October 2015
American Speech-Language-Hearing Association (2007). Scope of practice in speech-language-pathology
[Scope of Practice]. Available from www.asha.org/policy
American Speech-Language-Hearing Association (n.d.). End-of-life issues in speech-language pathology.
Retrieved from http://www.asha.org/slp/slinical/endoflife/
Blackburn GL, Bistrian BR, Maini BS, Schlamm BA, & Smith, MF (1977). Nutritional and metabolic
assessment of the hospitalized patient. The Journal of Parenteral and Enteral Nutrition, 9(1), 11-22.
Boczko F (2005). Managing dysphagia in dementia: A timed snack protocol. Recent pilot studies indicate
that appropriate snacks attentively provided can produce needed weight gain. Perspec Gerontol, 10, 178.
Brush JA & Camp CJ (1998). Spaced retrieval during dysphagia therapy: A case study. Clinical
Gerontologist, 19, 96-99.
Candy B, Sampson EL & Jones L. (2009). Enteral tube feeding in older people with advanced dementia:
Findings from a Cochrane systematic review. International Journal of Palliative Nursing, 15(8), 396-404.
Chen JH, Lamberg JL, Chen Y, et al. (2006). Occurrence and treatment of suspected pneumonia in longterm care residents with advanced dementia. J Am Geriatr Soc, 41(5), 290-295.
Easterling CS & Robbins E (2008). Dementia and Dysphagia. Geriatric Nursing, 29(4), 275-285.
Finucane T E. (1995). Malnutrition, tube feeding, and pressure sores: Data are incomplete. Journal of the
American Geriatrics Society, 43, 447–451.
Finucane TE, Bynum JPW. (1996). Use of feeding tubes to prevent aspiration pneumonia. Lancet,
348(9039):1421-1424.
Finucane TE, Christmas C & Travis K. (1999). Tube feeding in patients with advanced dementia: A review
of the evidence. Journal of the American Medical Association, 282, 1365–1370.
Fuh J-L, Liao K-K, Wang S-J, Lin K-N (1994). Swallowing difficulty in primary progressive aphasia: A case
report. Cortex, 30, 701-705.
Gillick MR & Mitchell SL. (2002). Facing eating difficulties in end-stage dementia. Alzheimer's Quarterly
Journal, 3(3), 227-232.
Grasbeck A, Englund E, Horstmann V, Passant U, Gustafson L (2003). Predictors of mortality in
frontotemporal dementia: A retrospective study of the prognostic influence of pre-diagnostic factors. Int
J Geriatr Psychiatry, 18, 594-601.
Hoffer LJ. (2006). Tube feeding in advanced dementia: The metabolic perspective. BMJ, 333, 1214-1215.
Horner J, Albert MJ, Dawson DV, Cook GM (1994). Swallowing in Alzheimer's disease. Alzheimer's
Disease and Associated Disorders, 8(3), 177-189.
Huckabee M L & Pelletier C A (1999). Management of adult neurogenic dysphagia. San Diego, CA:
Singular.
Ikeda M, Brown S, Holland AJ, Fukuhara R, Hodges JR (2002). Changes in appetite, food preference, and
eating habits in frontotermoral dementia and Alzheimer's disease. J Neurol Neurosurg Psychiatry, 73,
371-376.
Jaul E, Singer P & Calderon-Margalit R. (2006). Tube feeding in demented elderly with severe disabilities.
IMAJ, 8, 870-874.
Krival K (2013, October). Dysphagia services in nursing homes: An opportunity for improving patient
outcomes through palliative care. Perspectives on Gerontology, 18 (3), 88-102.
Lipner HS, Bosler J & Giles G (1990). Volunteer participation in feeding residents: Training and
supervision in a long-term care facility. Dysphagia, 5(2), 89-95.
Knol W, van Marum RJ, Jansen PA, Souverein PC, Schobbem AF, Egberts AC (2008). Antipsychotic drug
use and risk of pneumonia in elderly people. Journal of the American Geriatrics Society, 56(4), 661-666.
Langmore SE, Olney RK, Lomen-Hoerth, Miller BL (2007). Dysphagia in patients with frontotemporal
lobar dementia. Arch Neurol, 64(1), 58-62.
Liu W, Miller BL, Kramer JH, et al. (2004). Behavioral disorders in the frontal and temporal variants of
frontotemporal dementia. Neurology, 62, 742-748.
Litvan I, Sastry N, Sonies (1997). Characterizing swallowing abnormalities in progressive supranuclear
palsy. Neurology, 48, 1654-1662.
Logemann J A, Gensler G, Robbins J, et al. (2008). A randomized study of three interventions for
aspiration of thin liquids in patients with dementia and Parkinson's disease. Journal of Speech,
Language, and Hearing Research, 51, 173-183.
Meier D & Beresford L (2007). Consultation etiquette challenges palliative care to be on its best
behavior. Journal of Palliative Medicine, 10(1), 7-11.
Mendez MF, Cummings JL (2003). Dementia: A Clinical Approach, 3rd ED. Philadelphia, PA: ButterworthHeinemann.
Mitchell S L. Buchanan J L, Little S, & Hamel M B. (2003). Tube feeding versus hand-feeding nursing
home residents with advanced dementia: A cost comparison. Journal of the American Medical Directors
Association, 4, 27–33
Mitchell SL, Kiely DK, Hamel MB, Park PS, Morris JN. (2004). Estimating prognosis for nursing home
residents with advanced dementia. JAMA.,291(22):2734-2740.
Mitchell S L, Kiely D K, & Lipsitz L A. (1998). Does artificial enteral nutrition prolong the survival of
institutional elders with chewing and swallowing problems? Journal of Gerontology: Medical Sciences,
53A(3), M207–M213.
Mitchell SL & Lawson. (1999). Decisional support tool: Making Choices: Long-term Feeding Tube
Placement in Elderly Patients: A Book and Guide for Substitute Decision-Makers
http://decisionaid.ohri.ca/decaide.html
Mitchell SL, O’Connor A, Tetroe J. (March 2000). Making Choices: Long-Term Feeding Tube Placement in
Elderly Patients: A Book and Audiotape for Substitute Decision-Makers.
http://decisionaid.ohri.ca/docs/Tube_Feeding_DA/index.htm.
Mitchell SL, Tetroe J, O’Connor A.(2001). A decision aid for long-term tube-feeding in cognitively
impaired older persons. J Am Geriatr Soc.,49(3), 313-316.
Mitchell S L. Teno J M, Roy J, Kabumoto G, & Mor V. (2003). Clinical and organization factors associated
with feeding tube use among nursing home residents with advanced cognitive impairments. Journal of
the American Medical Association, 290, 73–80.
Monteleoni C. & Clark E. (2004). Using rapid-cycle quality improvement methodology to reduce feeding
tubes in patients with advanced dementia: Before and after study. British Medical Journal, 329, 491–
494.
Musson ND, Frye GD &Nash M (1997). Silver spoons: supervised volunteers provide feeding of patients.
Geriats Nurs, 18(1), 18-9.
Nair S, Hertan H & Pitchumoni CS. (2000). Hypoalbuminemia is a poor predictor of survival after
percutaneous endoscopic gastrostomy in elderly patients with dementia. American Journal of
Gastroenterology, 95(1), 133-136.
Pollens R. (2004). Role of the speech-language pathologist in palliative hospice care. Journal of Palliative
Medicine, 7(5), 694-702.
Priefer BA & Robbins J. (1997). Eating changes in mid-stage Alzheimer's disease: A pilot study.
Dysphagia, 12, 212-221.
Regnaud C, Leslie P, Crawford H, Matthews D & Gibson L (2010). Gastrostomies in dementia: bad
practice or bad evidence? Age and Ageing, 1-3.
Reisberg B, Ferris SH, De Leon MJ, Crook T. (1982). The Global Deterioration Scale for assessment of p
Robbins J, Gensler G, Hind J, Logemann J A, Lindblad A S, Brandt D, et al. (2008).
Comparison of 2 interventions for liquid aspiration on pneumonia incidence: a randomized trial.
Annals of Internal Medicine, 148(7), 509-518.
Robbins J, Gensler G, Hind J, Logemann J A, Lindblad A S, Brandt D, et al. (2008). Comparison of 2
interventions for liquid aspiration on pneumonia incidence: a randomized trial. Annals of Internal
Medicine, 148(7), 509-518.
Robinson S, Clump D, Weitzel T et al (2002). The memorial meal mates: A program to improve nutrition
in hospitalized older adults. Geriatr Nurs, 23, 332-5.
Roe JWG, Leslie P & Drinnan M. (2007). Oropharyngeal dysphagia: The experience of patients with nonhead and neck cancers receiving specialist palliative care. Palliative Medicine, 21, 567-574.
Royal College of Physicians and the British Society of Gastroenterologists. (2010). Oral feeding
difficulties and dilemmas: A guide to practical care, particularly towards the end of life. London: RCP.
Regnaud C, Leslie P, Crawford H, Matthews D & Gibson L. (2010). Gastrostomies in dementia: bad
practice or bad evidence? Age and Ageing, 1-3.
Sampson, EL, Candy B, & Jones L (2009, April 15). Enteral feeding for older people with advanced
dementia. Cochrane database of systematic reviews (2), CD007209.
Sharp H & Brady Wagner L. (2007). Ethics, informed consent, and decisions about nonoral feeding for
patients with dysphagia. Topics in Geriatric Rehabilitation, 23(3), 240-248.
Sharp HM & Shega JW (2009). Feeding tube placement in patients with advanced dementia: The beliefs
and practice patterns of speech-language pathologists. AJSLP, 18, 222-230.
Shega J W, Hougham G W, Cox-Hayley D, Sachs G A, & Stocking C B. (2004). Advanced dementia and
feeding tubes: Do physician factors contribute to state variation? Journal of the American Geriatrics
Society, 52, 1217–1218.
Shega J W, Hougham G W, Stocking C B, & Sachs G A. (2003). Barriers to limiting the practice of tube
feeding in advanced dementia. Journal of Palliative Care, 6, 885–893.
Spiekerman A (1995). Nutritional assessment (protein nutriture). Analytic Chemistry, 67, 429-436.
Sullivan PA. Dysphagia in the elderly and dementia: Helping the helper (2008, March). Perspectives on
Swallowing and Swallowing Disorders (Dysphagia), 17, 12-18.
Teno J M, Mor V, DeSilva D, Kabumoto G, Roy J, & Wetle T. (2002). Use of feeding tubes in nursing home
residents with severe cognitive impairment. Journal of the American Medical Association, 287, 3211–
3212.
Vitale CA, Monteleoni C, Burke L, Frazier-Rios D, Volicer L. (2009). Strategies for improving care for
patients with advanced dementia and eating problems: Optimizing care through physician and speech
pathologist collaboration. Annals of Long Term Care, 17(5), 32-39.
Wang SY. Fukagawa N, Hossain M, Ooi WI (1997). Longitudinal weight changes, length of survival, and
energy requirements of long-term care residents with dementia. J Amer Geriatr Soc, 45, 1189-95.
Waters SQ & Sullivan PA (2012m October). An approach to guiding and supporting decision-making for
individuals with Dementia: Feeding, swallowing, and nutrition considerations, Perspectives on
Swallowing & Swallowing Disorders (Dysphagia), 21(3), 105-111.
Watson R & Green SM. (2006). Feeding and dementia: A systematic literature review. Journal of
Advanced Nursing, 86-93.
Wenning GK, Litvan I, Jankovic J, et al. (1998). Natural history and survival of 14 patients with
corticobasal degeneration confirmed at postmortem examination, J Neurol Neurosurg Psychiatry, 64,
184-189.