Feeding, Swallowing and Nutritional Challenges in the Older Adult with Dementia:

Considerations in Guiding and Supporting Decision-Making

Paula A. Sullivan, MS., CCC-SLP, BCS-SNorth Florida/South Georgia Veterans Health Administration

Paula.sullivan@va.gov

Decision-Making In the Individual with Dementia

• Problems with swallowing, feeding, and nutrition are common in the elder with dementia and often emerge during an acute event, when prognosis is unclear

• When this crisis situation occurs, solutions are extremely limited, fraught with emotion, and made with limited evidence regarding the most appropriate goals of care

Feeding Tubes in Advanced Dementia

• Despite the complete lack of evidence supporting benefits of FTs in this population (Finucane, Christmas, & Travis, 1999) and the high likelihood of significant burdens and risks, their use remains prevalent

• Feeding tubes are used in about one third of all nursing home residents with advanced dementia (Sampson, Candy, & Jones, 2009)

Alzheimer’s disease is THE most frequently encountered neurodegenerative disease

Dementia• Over 100 causes of dementia• Variety of dementia makes treatment extremely

difficult• Big four that make up 94-98% of dementias

– Alzheimer’s – 65% (affects the hippocampus at the base of the cortex)

– Lewy body (affects the entire brain, so symptoms are wide-ranging and unpredictable)

– Frontotemporal (Pick’s disease) (affects the frontal and temporal lobes in the front and sides of the brain); may occur in 5% of ALS pts)

– Vascular (affects the entire brain, so symptoms can vary widely)

Epidemiology of Dementia (Alzheimer’s Association, 2010)

• Of Americans 65 and older, 1 in 9 has Alzheimer’s disease (AD)

• 1 in 3 people age 85 and older has AD• AD is the most common form of dementia• The number of persons with AD is projected to

increase from 5.1 million in 2014 to up to 16 million in 2050

Epidemiology of Dementia

• Median survival after the onset of symptoms in dementia ranges from 3-6 years (Larson et al., 2004)

• Approximately 70% of persons with dementia die in nursing homes (Mitchell et al., 2005)

• Advanced dementia meets accepted standards of an end-of-life condition but it is not widely accepted as a terminal illness (Mitchell et al., 2004; Morrison & Sie, 2000)

Typical Clinical Course of Advanced Dementia

• “Sentinel events”• Eating difficulties and recurrent infections are

common complications such as UTIs• Pneumonia is the immediate precipitating

cause of death in more than 50% of cases (Chen et al., 2006)

Dementia Dysphagia

• Eating problems are the hallmark of end-stage dementia because the ability to eat independently is generally the last activity of daily living to be lost prior to death (Chen et al., 2007)

• As dementia progresses, swallowing problems become more pronounced

• Dysphagia can be the result of behavioral (cognitive), sensory, motor problems (or combination)

Is Dysphagia a Terminal Symptom?(Regnard, Leslie, et al., 2010)

• In Alzheimer’s dementia, dysphagia can occur early in the disease process and is not always a terminal symptom as commonly believed (Preifer et al., 1997; Royal College of Physicians and the British Society of Gastroenterologist, 2010)

• Can be missed because of poor screening, atypical presentations, and care provider adjustments to its presence

Evolving Role of the SLP in Dementia Dysphagia Intervention

• We will be increasingly faced with the challenges of the older individual with dementia

• With that come accompanying health and economic challenges

• This will lead to increasingly complex choices and decision-making for the SLP

Decision-Making In the Individual with Dementia

Course goals: 1. Provide a model for addressing ethical dilemmas 2. Talk about the importance of early and periodic

interdisciplinary assessment to hopefully avoid crisis situations

3. Discuss decision support tools to assist team and family

Case Presentation 1• Consult from PCP: “Elderly man has difficulty swallowing

some foods, especially meats, despite modifications such as grinding. Your assessment and recommendations will be appreciated.”

• 92 year old man with history of dementia residing with family• Family manages medication. Pt walks alone at home;

otherwise uses a cane or walker.• Dysphagia complaints: Per daughter, 6 month history of

c/o food sticking, coughing with liquids for at least 6 months. • Only mild gradual weight loss; no recent chest colds or PNA

Case Presentation 2

• 84 year old man presented to ED with diagnosis of advanced dementia admitted with UTI

• Declining ability to perform ADL’s, FTT/refusing food and feeding, dehydrated

• Lived alone, no known family or AD

Case Presentation 3• 84 year old patient with Parkinson’s admitted for altered MS and poor oral

intake on 2/12/13 – limb jerking, hallucinations; family report of declining functioning at

home– Multiple ED visits during prior month with comparable presentation– Well known to Speech service for a 3 year period for both LSVT and

periodic dysphagia evaluation and intervention– AD on file stating DNR/DNI

• Most recent VFSS 1 month ago demonstrated:– moderate oropharyngeal dysphagia with silent, thin liquid aspiration – aspiration managed with 10cc Provale cup or nectar thick liquids – patient clearly expressed wishes regarding QoL and against Provale

cup and thickened liquids

Case Presentation 3

• No clearly identifiable reason for delirium and poor oral intake

• Wife, daughter, and care giver present at time of bedside assessment

• Clinical Swallowing Observations: psychosis/delirium; unsafe for any oral intake; family ADAMANT about desire for comfort care

Decision-Making

• If you were informed that you had six months to live, would you:-Want to know?-Don’t want to know?-Not sure?-Need more time to think about it?

What is Ethics?

• System of moral principles that helps differentiate between choice that are good and those that are bad (Gabard & Martin, 2011)

• Sometimes this is very easy; most times it is VERY complex

• Thus, ethical frameworks can assist us

How do you set aside your own views when helping patients,

family members, and significant others?

What Are You Thinking?

• Perform a self-assessment – reflect on your own beliefs and values

• Explore possibility of personal biases• Avoid judgment

SLP Misconceptions About PEG in Advanced Dementia (Sharp & Shega, 2009)

• Sharp and Shega mailed a survey to geographically stratified random sample of 1,050 medical SLPs to determine beliefs and practices about use of PEG in pts with advanced dementia– Response rate of 57%– 56% of SLPs recommend PEG (many believe that PEG improves

nutritional status and increases survival; many believed that PEG improves nutritional status and increases survival; relatively few believed that PEG improved functional status or QoL

– Nearly 40% believed that PEG was standard of care while 15% believed it should be

– Only 11% of SLPs would want a PEG themselves

Physicians’ End-of-Life Attitude Scale (PEAS) (Levetown, et al., 2000)

• Outcome measure for palliative care education (38 questions)

• Assesses the willingness of medical trainees to care for dying patients

• Data indicated that for some persons, life experiences may lessen difficulties in dealing with dying patients, while for others, personal losses may exacerbate such concerns

Personal Journey

Autonomy

• Respect for a person's worth and right to make decisions

• Person’s should have control over their own destiny and be able to make decision that determine their fate

• When making a decision, the individual should be free from interference and undue influences by others and for avoidable obstacles

Examples of Autonomy

• SHARED DECISION-MAKING• Persons should be aware of pros and cons of

each option• Information should be presented both verbally

and in written form• Provide information into segments to allow

the individual the time to fully review and comprehend

Beneficience

• TAKE POSITIVE ACTIONS TO DO GOOD FOR OTHERS AND ACT TO PREVENT OR REMOVE HARM

• Weighing probably benefits against potential risks of harm

• Assess swallow function• Recommend ways to make swallowing

preferred liquids and solids easier and safer

Nonmaleficense

• DO or INFLICT NO HARM; WHAT WE DO SHOULD HAVE A GREATER PROBABILITY OF HELPING THAN OF HARMING

• An unappealing diet may reduce patient coughing and distress but could result in decreased intake and dehydration

Justice

• PROVIDE WHAT PATIENTS NEED IN A FAIR AND EQUITABLE MANNER; fair distribution of resources

• Will cost of VFSS influence our plan of care?

Health Care Decision-Making• Health care facilities are obligated to provide written

information about a patient’s rights to make decisions about care

• This includes: right to accept or refuse medical or surgical treatment and the right to make advanced directives

• If the patient has decision-making ability the patient’s agreement or refusal must be an informed consent

Health Care Decisions

• Capacity – person making the decision is able to understand the facts of a situation and understand how the decision is personally relevant

• Competence or incompetence – determined by a judge

Determining Decisional Capacity(Reichman, Streim, Karlawish, & Lobel, 2009)

• Understanding – comprehend relevant information and the choice to be made

• Choice – ability to clearly state a preference and to be consistent in the expression of this preference

• Appreciation – the ability to understand how the facts of the situation and decision are personally relevant

• Reasoning – ability to weight pros and cons and understand the impact of choices

When determining decision-making capability, we must balance the principle of autonomy with beneficence. This requires education and time.

Importance of Patient Education• O’Brien et al. (1995) conducted a study of 421

randomly selected, competent persons living in 49 NHs

• Only 1/3 would favor a FT if unable to eat due to permanent brain damage

• 25% of those who initially favored FTs changed their minds when they learned that they might have to be physically restrained

Advance Care Planning

• Living Will – legal document that specifies the type of medical treatments and life-sustaining measures a person’s would not want in case of end-stage condition, vegetative state such a artificial feedings/ In AD, a person is not considered terminally ill until the later stages

• Medical Power of Attorney – individual names a healthcare proxy to make medical decision for him/her in the event they are unable to

Proxy Role - “substituted judgment”

Elements of Decision Making Capacity (Casper, 2012)

• Comprehension – if patient lacks understanding, a proxy may make these decisions

• Choice – the patient should be able to consider more than one alternative

• Consequences – the patient should appreciate the risks and benefits of a choice

• Coercion – the patient must not fear reprisal as a result of making a decision

Integrative, Comprehensive Management

Eating, Feeding, and Swallowing Disorders in Dementia

• Eating: The action of managing food on the plate, using implements, placing food in the mouth, chewing the food, and propelling it through the mouth, pharynx, and esophagus into the stomach

• Feeding: Generally the same as eating. Both include the social, behavioral, and motor control needed to get oral nutrition

• Swallowing: The actions involved in physically placing food in the mouth, chewing, and the oral, pharyngeal, and esophageal stages of the swallow

Early Identification• “Early identification and impeccable assessment” (and

counseling) once disease is suspected or identified• In Alzheimer’s dementia, dysphagia can occur early in

the disease process and is not always a terminal symptom as commonly believed (Preifer et al., 1997; Royal College of Physicians and the British Society of Gastroenterologist, 2010)

• Regular monitoring and management man prevent complications (FTLD may lead to swallowing deficits), yield prognostic information, and optimize management

Periodic Assessment

• Ensure the highest level of functioning during disease course and to make sure the wishes of the surrogate and patients are honored with changes over time

• Quarterly screenings• Periodic monitoring by health care team

Dysphagia in Alzheimer’s Dementia (Horner and colleagues, 1994)

• Prospective study of 25 pts with moderate or severe AD evaluated– Only 4 showed normal performance– 6/25 (28.6%) aspirated; higher aspiration with more severe

dementia– Most prevalent abnormalities: delayed pharyngeal response,

prolonged oral phase, inefficient pharyngeal clearance– Severity of swallow on VFSS correlated with severity of

dysphagia-

Eating and Swallowing in FTD and AD (Ikeda et al., 2002)

• Questionnaire to relatives of 91 patients with FTLD (FTD and SD) and AD; swallowing not formally assessed

• 30/36 questions probed for changes in appetite, food preference, eating habits, oral behaviors

• 6 probed swallowing problems• Severity of dysphagia was similar for both

groups

Eating and Swallowing in FTD and AD (Ikeda et al., 2002)

• Frequency of reported problems was higher in the FTLD group than AD, especially for the eating domains

• Overall, dysphagia symptoms were the least reported problems in all patient groups, occurring in 20-30% of patients

• AD pts developed swallowing symptoms earlier in disease course than patients with FTD and SD

Dysphagia in FTLD (Langmore and colleagues, 2007)

• 21 pts with 3 variants of FTLD (9 w/ FT dementia; 7 w/ progressive nonfluent aphasia; 5 w/ semantic dementia)

• FEES assessment• Of 21 patients, 4 caregivers reported

swallowing difficulties• FEES revealed moderate dysphagia in 12/21

pts

Dysphagia in FTLD (Langmore and colleagues, 2007)

• Abnormalities were not explained by compulsive eating behaviors but seemed to reflect deficits in cortical and subcortical pathways connecting with brainstem swallowing center

• Conclusions: Swallowing abnormalities are found in many patients with FTLD. The appearance of dysphagia signals progression of FTLD to brain stem systems

Dysphagia in Parkinson’s Disease

• 50-60% of patients experience oral, pharyngeal and esophageal phase dysphagia (Lieberman et al., 1980; Fuf et al., 1997)

• Oral stage deficits: lingual tremor at rest, multiple lingual gestures during oral bolus manipulation and propulsion

• Pharyngeal stage deficits: decreased laryngeal elevation, incomplete UES relaxation, pharyngeal residue, aspiration

Most Frequent Swallowing Disorders

• Apraxia of Swallow (can be related to haloperidol use)

• Delayed Pharyngeal Swallow - often talking during the delay with bolus in pharynx - particularly in FTD

• Impaired pharyngeal swallow-Reduced tongue base retraction-Reduced laryngeal elevation

49

Eating/Feeding Disorders

Most Frequent Feeding/Eating Disorders

• Visual agnosia for food – failure to recognize food as edible

• Distractibility• Eating apraxia – inability to use eating

utensils• Tactile agnosia for food - failure to

recognize food as something to swallow in the mouth

Other Frequent Feeding/Eating Disorders

• Absent or continuous chewing• Pocketing food• Spitting food• Multiple swallows• Food refusal• Compulsive, rapid, careless eating leading

to airway obstruction and asphyxia

Medical and Swallowing Evaluation

Clinical Evaluation

• Is there an advanced directive?• What are the patients/family’s understanding

of status?• What are the patients/family’s goals of care?

Medical Evaluation

• Should consider problems with eating and swallowing as a clinical syndrome that trigger a medical assessment and work-up

• Many factors are potentially reversible necessitating careful search

• Obtain a clear understanding of baseline medical problems, functional status, mental status, stage of dementia, and baseline eating status

Medical Evaluation

• Rule-out acute medical problems (e.g. infection, stroke, medication adverse effects, delirium) or other potentially reversible causes of eating problems

• Look for associated disorders that may worsen cognitive impairment– Depression– Sleep disorders – idiopathic insomnia, nocturia,

pain, sleep apnea, restless limb syndrome/periodic limb movements of sleep

Antipsychotic Medications (Knol et al., 2008)

• 60% increase pneumonia risk demonstrated on a case-control study of elderly patients

• Most events with atypical antipsychotics (Clozapine, Abilify, Risperdal)

• Typical drugs: sedation (haloperidol, chlorpromazine)• Look at other drugs that potentially incraese cognitive impairement

(neuroleptics, anticholonergic drugs, antihistamines, sedative anticonvulsants

Note: Only 30 percent of demented patients on antipsychotics were still alive at the end of 12 months, compared to 59 percent of those who took a placebo. Risk increased significantly after mote than a year on the medications (Ballard, Wolfson Center for Age-Related Diseases at King’s College, London).

Other Evaluation Considerations

• Changes in sleep or increasing fatigue• Changes in social history• Cognitive Screening (MOCA, MMSE, etc.)• Depression (Geriatric Depression Scale)• Physical exam, labs

Differentiating Delirium from Dementia in the Acute Setting

Delirium Dementia Depression

Rapid onset Insidious Can be either

Impaired consc. Fully conscious Conscious

Stupor common Normal arousal Normal, slower

Agitation Not easily agitation

Blunted or easy agitation

Recent memory deficits

Global memory deficits

No loss

Differentiating Delirium from Dementia in the Acute Setting

Delirium Dementia Depression

Sudden onset confusion

Chronic confusion No confusion

Minimizes symptoms

Ignores symptoms Exaggerates symptoms

Visuospatial deficits

Intact visuospatial Unaffected

Bedside/Clinical Assessment

• Determine scope of dysphagia evaluation• Assessment may include bedside, FEES, and/or

VFSS assessment to guide decision-making• What does the patient/family want, need,

and/or can tolerate

Bedside/Clinical Assessment• Define behavioral/cooperation level/ability to participate• Determine whether poor attention or distraction is a factor• Identify easily reversible causes of dysphagia

(e.g. loose fitting dentures, constipation, fatigue)• Determine food preferences, textures, temperature• Easier foods/fluids, postures/positions • Determine whether conservative measures (offering finger

foods, smaller portions, favorite foods, or nutritional supplements) may improve oral intake

• Need for feeding assistance

Evaluation Considerations

Bedside Exam– Observe patient self-feeding or being

fed. Time feeding process: how long does it take for patient to “eat” 30 cc or 12 half teaspoons of food? (e.g. pudding; normal time is 2.5 minutes)

63

Feeding Scales/Tools

• Edinburgh Feeding Evaluation in Dementia (EdFED)

• Eating Behavioral Scale (EBS)

These scales can be used to document change in feeding/eating over time, part of quarterly NH screenings

Other Clinical/Bedside Evaluation Considerations (Regnard, Leslie, et. Al., 2010)

• Eating for survival vs. eating for pleasure• Patient and caregiver distress from eating

(prolonged oral meals, repeated admissions for pneumonia and fatigue caused by malnutrition)

• Symptoms of malnutrition (taste changes, anorexia, fatigue, poor wound healing, susceptibility to infections and gastric stasis)

• Administration of medications

Evaluation Consideration

Bedside Exam– Determine whether VFSS is necessary

• Should be performed only when it will affect the course of treatment and will not present any unnecessary risk, burden, or cost to the patient/family

• Yes, if pharyngeal swallow disorder is suspected and patient is potentially amenable to management (moderate, not severe patients)

• No, if eating or feeding disorder or oral stage problem is present

66

What is the Purpose of the Instrumental Exam (Rosenbek, 2013)

• Is this person aspirating?• Is the individual at risk for aspiration?• Is the person at risk from aspiration?

Aspiration Considerations (Rosenbek, 2013)

• Aspiration on VFSS does not mean aspiration during meals

• No aspiration on VFSS does not mean no aspiration during meals

• All aspirators do not have health consequences• Health consequences from aspiration may have

nothing to do with prandial aspiration• Aspirators will aspirate and making them NPO does

not alter this fact

Nutritional Assessment and Intervention

Nutritional Status in Dementia

• Resting metabolism rate is low because muscle wasting has shrunk lean body mass and brains are atrophic

• Metabolic rate above basal is low because patients are physically inactive

• Patients often have an adapted state whereby they have a history of weight loss which the body adapts to by reducing its metabolic rate and retaining dietary protein more efficiently

• Demented patients may be thin and eat less than seems appropriate but in most cases they are NOT STARVING; they are in a state of physiologic homeostasis

Longitudinal Findings in LTC Residents with Dementia (Wang et al., 1997)

Hospitalized demented patients were found to have:– a history of weight loss before admission– Low resting metabolic rate– Constant body weight over a prolonged period of

observationThey were not progressively starving but lived in condition of metabolic homeostasis.

Weight Loss and Malnutrition in Dementia

• Memory impairment can contribute to malnutrition as AD pts may forget to eat (Morely & Silver, 1988; Claggett, 1989)

• Pts require more calories with development of restlessness and increased motor activity

• Distractibility and agitation make sitting for mealtime problematic

• Medication effects – dry mouth, sedation• Visual agnosia - loss of food or utensil recognition

Weight Loss in Dementia

• Referral for PEG is often prompted by significant weight loss or fall in serum albumin

• In a prospective study, Nair et al. (2000) foundthat only 50% of demented patients with inadequate oral intake are likely to survive beyond 6 months

• Survival higher in age-matched control group (w/o PEG) with a higher albumin than in patients with PEG

• This underscores the benefit of more timely commencement of nutritional intervention

Nutritional Monitoring

• The most simple indicator of change in nutritional status is obtained through serial weights

• Blackburn et al., (1977) define weight loss as a decline of 5% body weight in one month, 7.5% in 3 months, and 10% in 6 months

Albumin vs. Prealbumin

• Prealbumin is thought to be best predictor of nutritional status because it is less affected than albumin by other factor and most reflective of protein intake (Spiekerman, 1995)

• A serum albumin of less than 5.0 mg per dL indicate end of life is imminent

Catabolic State

• Food is not absorbed• Tissues no longer heal well• Infection is difficult to cure• An irreversible downward spiral

The End-of-Life Process

TF in Advanced Dementia: Length of Survival

• Outslander et al. (1993) reviewed 7 studies that addressed a comparison of elderly patients who were on oral diets vs. PEG. No clear evidence that PEG affected length of survival

• In a carefully performed study of NH patients with advanced dementia and eating disorders, Mitchell et al. (1998) found that patients fed through a gastrostomy tube and those who continued to be fed by hand had the same survival rate

The End-of-Life Process

• Starvation produces a euphoric state that increases comfort (body uses fat as energy source and ketones build up; ketomia causes the euphoria)

• Feeding even small amounts can prevent ketonemia and prolong the sense of hunger

• As protein intake decreases, urine output is diminished• A by product of the conversion to body fat to energy is

water. This source of energy and fluid, along with decreased urine output, can combine to meet the reduced metabolic needs of most patients.

The End-of-Life Process(Bernat et al., 1993)

• Reduction in thirst and hunger drives results from a gradual reduction in gastrointestinal peristalsis and a decrease in intravascular volume; forced nutrition in the presence of diminished peristalsis produces nausea and vomiting

• Forced nutrition (NG, IV, enteral feeding) can create discomfort in addition to direct discomfort of the tubes themselves

• Thus, attempts to compensate for the normal reduction of food and fluid intake in dying patients increases their discomfort

Natural Dehydration• Secretions in lungs are diminished (reduced cough and

congestion)• Can lead to a melting away of the swelling and

increased comfort those with edema and ascites• Less fluid in GI tract which may decrease nausea,

vomiting, bloating, and regurgitation• Less urine output• ANH can worsen fluid retention symptoms (peripheral

edema, ascites, pleural effusions) (Hvodo et al., 2005)

Food & Metabolism: Talking with Loved Ones

• Talk about the natural process in dying: decreased appetite, decreased thirst

• When body’s metabolism begins to shut down, it no longer builds the body’s tissues and organs = anabolic state of nutrition

• When body’s tissues and organs begin to break down regardless of whether persons is taking nutrition = catabolic state

Comfort Care

• McCann et al. (1994) performed a prospective evaluation of 32 mentally aware, competent patients with terminal illness in a 10-bed comfort care unit

• Outcome Measures: Symptoms of hunger, thirst, and dry mouth were recorded, and the amounts and types of food and fluids necessary to relieve these symptoms were documented. The subjective level of comfort was assessed longitudinally in all patients

Comfort Care

• 20 (63%) never experienced any hunger• 11 (34%) has symptoms only initially• In all patients, symptoms of hunger, thirst, and dry

mouth could be alleviated, usually with small amounts of food, fluids, and or application of ice chips and lip lubrication

• Comfort care included use of narcotics for relief of pain or SOB in 94% of patients

• Conclusion: food and fluid administration beyond the specific requests of patients may play a minimal role in providing comfort to terminally ill patients

Dysphagia Goals of Intervention in Dementia Dysphagia

• Maximizing swallowing function and optimizing nutrition and hydration

• Assist in the minimization of risks • Reduce eating fatigue and distress (maximize

patient and family comfort and satisfaction with eating and drinking)

• Honor and accept patient and family’s quality of life wishes

Early and Mid-Stage InterventionConsiderations

Thickened liquids are the most frequent strategy for managing aspiration risk

(Garcia et al., 2005)

Modified Foods and Fluids

• Excessive food and fluid modification may decrease QoL and impact nutritional status by negatively affecting appetite and oral intake

• Protocol 201 demonstrated that “thicker is not always better” (Robbins et al., 2008)

• UTIs and dehydration were more common with thickened liquids

• Mean LOS due to pneumonia was 3x longer for patients drinking honey thick liquids compared to those randomized to nectar thick liquid or chin tuck

Medicare Recommends Regular Diets for NH Residents (ASHA Leader, April 2013)

• Research shows “little benefit” from therapeutic diets, tube feedings, and altered consistency diets

• “Unless a medical condition warrants a restricted diet, consider beginning with a regular diet and monitoring how the person does eating it.”

• “Interdisciplinary team members should, including heath care practitioners, should be involved in balancing the risks of aspiration against the potential benefit of more liberal diets and food consistency, and deciding whether there are viable alternatives

(Standards developed by interdisciplinary task force sponsored by Pioneer Network and Rothschild Foundation)

Preserving Feeding Independence

• Position properly• Investigate whether patient can safely use any finger

foods• Place small amounts of foods on lips and encourage

licking it off• Decrease all distractions• Create a pleasant atmosphere that increases appetite• Try backward chaining feeding technique

Compensatory Management Strategies

• Postural techniques• Think three T’s (taste, temperature, texture) to

maximize sensory input and facilitate a faster oral onset or faster triggering of the pharyngeal swallow

• Introduce foods that are highly seasoned, spicy, and sweet

• Carbonated beverages

Eating Intervention Strategies(Vitale, Monteleoni et al., 2009) Strategies

Backward Chaining

• Place the spoonful of food in patients’ hand and help them guide it to their own mouth

• Provides cortical/subcortical awareness/stimulation of the need to swallow

• Assistance is gradually withdrawn as patient learns to regain the ability to feed themself

Spaced Retrieval (SR) Technique• Spaced retrieval is an intervention strategy that uses

expanded rehearsal• Patient practices successfully recalling information

over progressively longer periods of time• Clinical procedure (Brush & Camp, 1998):

– Patient is first told target information then immediately asked to recall it

– In subsequent trials, the patient is asked to recall the information after time intervals that are doubled as training progresses

– The time intervals between recall attempts are interspersed with conversation or therapy activities

– If patient makes an error, the clinician provides the correct information, asks for immediate recall, then goes back to the last time interval at which the patient was correct

Spaced Retrieval

• SR therapy sequence to teach use of liquid chaser (Brush & Camp, 1998) to an 86 year old with mild dementia (19/30 MMSE). All training occurred at mealtimes:– Session 1 & 2: Cue card presented at beginning of meal,

“What do you do after your swallow your food.” The pt responded correctly and was then instructed to take a sip of liquid. The SLP asked pt to recall card information and carry out behavior at 1, 2, 4, 8, and 16 minutes w/o errors. The cue card was faded. The training fit naturally into the eating pauses during the meal.

Spaced Retrieval

• SR sessions 3-13 (Brush & Camp, 1998):

The pt remembered the sequence and would only be asked, “What should you do after swallowing food?” when he made an error and put the next bite into his mouth w/o first taking a sip of liquid. The pt was able to implement the swallowing technique with 95% success and one verbal reminder during each meal.

Techniques to Optimize Hydration and Nutrition (adapted from Easterling and Robbins, 2008)

• Good oral hygiene (Chalmers & Pearson, 2005)

• Consistent environment and seat in the dining room

• Encourage 6 small meals and hydration breaks per day rather than 3 meals per day (Silver Spoons – Musson et al., 1990)

• Include foods that are spicy, sweet, and sour to maximize sensory input

Techniques to Optimize Hydration and Nutrition (adapted from Easterling and Robbins, 2008)

• Consult with a RD about appropriate high calorie snacks

• Encourage self-feeding• Don’t allow staff to be called away during

meals or when assisting pts with meals/snacks • Eliminate nonfood items from tables or trays

Techniques to Optimize Hydration and Nutrition (adapted from Easterling and Robbins, 2008)

• Make foods visually appealing• Allow pts to touch food – FINGER FOODS• Focus on patient preferences• Do not make patients wait when they arrive

for meals

Techniques to Optimize Hydration and Nutrition

• Timed Snack Protocol (Boczko, 2005)– Designed to decrease incidence of malnutrition and

dehydration in skilled nursing facilities– 4 week study in which residents were weighed weekly and

snacks given and consumed were recorded– Snacks offered every two hours after meals– Successful in improving hydration and nutrition and med

compliance– Snacks included highly spiced or sweetened finger foods

based on pt preference

Techniques to Optimize Hydration and Nutrition

• Memorial Meal Mates Program (Robinson and Colleagues, 2002)

• College-aged volunteers provided 3-hour training by interdisciplinary team

• Intake nearly DOUBLED: Mean intake of pts fed by Meal Mates was 59% vs. 32% for pts fed by nursing

Food for Thought: We have delegated one of the most important and challenging care activities

to the least educated, lowest paid worker, and underappreciated in the nursing home.

Caregiver Training

• NH staff have enormous responsibility providing feeding assistance

• Volunteer training program (Lipner, Bosler and Giles, 1990)– Volunteers must complete a training program (90-minute

lecture and practical experience)– Competency based – Some form of volunteer recognition to identify trained

volunteers– Quarterly or annual recognition program of volunteer

service

Caregiver Training

• Silver Spoons (Musson et al., 1997)

• Daily “Happy Hour” which encourages socialization and hydration

• “Second Seating” – lunch provided for pts that require modifications of eating style, food/fluids, timing

Other Intervention Considerations

• There are other factors that are likely more important and that need to be considered

• We must consider other medical variables and…

Predictors of PNA in Nursing Home Residents (Langmore, 2002)

• Requires suctioning• COPD• CHF• Feeding tube• Bedfast• High care mix index• Delirium• Weight loss

• Dysphagia (# 9)• UTI • Mechanically altered

diet• Dependence for eating• Bed mobility• Locomotion• Number of meds• Age (# 16)

Intervention in the Later Stages of Dementia

Tube Feeding

• Use of ANH in patients with advanced dementia has been deemed to lack benefit and carry substantial treatment burdens

• Use of ANH remains prevalent

FT in Advanced Dementia (Finucane et al., JAMA 1999)

• Does not improve nutritional status• Does not prevent aspiration• Does not reduce occurrence of pneumonia• Does not increase life expectancy• Increase in urinary and GI output resulting

in increase in pressure sores and need for restraints

Enteral tube feeding in older people with advanced dementia: Findings from a Cochrane systematic review

(Candy et al., 2009)

• Full literature review completed in April 2008• No RCTs were identified• 7 observational studies: 6 assessed mortality (no evidence of

increased survival with enteral feeding); other study assesses nutritional outcome

• 0 studies examined effect on QOL and no evidence of benefit in terms of nutritional status or prevalence of pressure ulcers

• Conclusions: Insufficient evidence to suggest that enteral TF is beneficial in people with advanced dementia. Data is lacking on the adverse effects of this intervention

Prevalence of Tube Feeding(Mitchell et al.,2003)

• Cross-sectional Medicare database of 200,000 NH residents with advanced dementia

• Approximately one-third had FTs• Pt characteristics consistently associated with

a higher likelihood of being fed included younger age, male, nonwhite race, divorced, lack of advance directives, recent decline in functional status, no diagnosis of AD

Prevalence of Tube Feeding(Teno et al.,2002)

• 1999 National Repository of Minimum Data Set of over 385,000 NH residents with advanced dementia

• 18.1% had FT• Rate varied form 3.8% in Nebraska to 44.8% in

D.C.• Pts with DNR order had a markedly reduced

utilization of FTs

Feeding Tubes in Advanced Dementia

• Considerable variability in use of FTs in long-term care

• 34% of NH residents with advanced dementia have FTs

• Two-thirds of these tubes are placed during an acute stay (Mitchell et al, 2003; Teno et al, 2010)

Influences Impacting Feeding Approaches in Advanced Dementia (Lopez et al, 2010)

• Study of 2 NHs in South Carolina– 1 with FT rate of 41.8%, other with rate of 10.7%

in patients with advanced dementia– Data collection included: physical environment,

mealtime and decision-making processes, direct observation and interview of key personnel, availability of educational materials, etc.

Influences Impacting Feeding Approaches in Advanced Dementia (Lopez et al, 2010)

• Results:-NH with low rate had homelike environment centered on eating as key component of life, mealtimes staffed with trained NAs who valued hand feeding, and advanced care planning included family and palliative care options-Other NH had striking variations

Conclusions: NH culture influences the approach to feeding. NHs with low rate include a physical environment that promotes enjoyment of food, administrative staff, and empowerment of staff to value hand feeding and shared decision-making involving family members.

TF is not Innocuous• TF has not been shown to prevent aspiration, heal

pressure wounds, improve nutritional status or decrease mortality in AD

• Burdens of FTs in AD include: recurrent and new aspiration, tube-associated and aspiration-related infection, increased oral secretions, discomfort, tube malfunction, use of physical and chemical restraints; need for hospital readmission to manage tube related complications

Feeding Tubes in Dementia

• The current evidence does not support use of FTs in this population

• Why is the use of FTs so high in this population”? - The greater majority of NH residents do not have

orders documenting their wishes about the use of artificial nutrition or hydration– NHs are fearful about regulatory scrutiny of weight loss– If SLP states the individual is not safe to eat, this is

interpreted as “do not feed”; hence, a FT is often placed

Misconceptions About FT in Advanced Dementia in Physicians

• Shega and colleagues (2003) conducted survey measuring physician knowledge and beliefs – 76% believed FT would reduce the risk of

aspiration– 75% believed it would accelerate healing of a

decubitus ulcer– 61% believed it would prolong survival– 27% believed it would improve functional status

SLPs Perceptions About PEG in Advanced Dementia (Sharp & Shega, 2009)

• Sharp and Shega conducted a survey of 1,050 medical SLPs to describe beliefs and practices about use of PEG in patients with AD– 56% of SLPs recommend PEG (many believe that PEG

improves nutritional status and increases survival– Nearly 40% believed that PEG was standard of care while

15% believed it should be– Only 11% of SLPs would want a PEG themselves– Conclusions: Discrepancy between SLPs beliefs,

literature, and self-reported practice.

Other Considerations in TF Placement: Symptom Management

• Eating for survival or eating for pleasure• Reducing patient distress of prolonged oral meals,

repeated admissions for PNA, fatigue due to malnutrition

• Reducing hospital admissions – antibiotics for infections can be administered via G-tube

• Continued administration of medications• Distressing mealtimes • Patient/family wishes

Management of Distressing Symptoms (Roe et al., 2007)

• Central to successful patient care• Coughing/choking• Increased dyspnea/SOB• Thick saliva• Excess saliva• Gagging• Difficulty chewing

The OTHER Option in the Later Stages

Hand Feeding• Labor intensive• 45-90 minutes per minutes per day are needed to hand feed and

deliver medications to patients with advanced dementia (Kayser-Jones et al., 1999)

• Hu et al. (1986) found staff took an average of 14 minutes per day to assist patients with mild to moderate dementia while family members took 28 minutes

• Burns, Jacoby, and Luthert (1990) found that AD patients in a residential facility required TWICE as much time to complete meals as non demented pts with physical impairments

• Potential fiscal incentive to tube feed pts with advanced dementia by NHs. Tube fed pts generate a higher daily reimbursement rate from Medicaid yet require less expensive nursing home care (Mitchell et al., 2003)

Hand Feeding

• Allows patients to maintain pleasure of tasting food as long as it remains comfortable for them

• Provides an opportunity for family members to care for their loved ones and for formal caregivers to interact with their patients

Supportive Nutrition: Comfort and Choice

• Small portions: offer small amounts more frequently• Include nutritious high calorie snacks• Use fats and sweets: butter, cream cheese, sour cream, honey,

jams, jellies• Consider supplements: Carnation Instant Breakfast, homemade

milkshakes, add powdered milk in cooking• Limit beverages with meals• Allow adequate times for meals• In patients with dysphagia: smooth and moist foods,

encourage liberal use of fats to lubricate, bolus formation, and calories, encourage ice chips, Italian ice, popsicles for hydration

Oral Feeding Options for People with Dementia: A Systematic Review

(Hanson et al., 2011)

-Reviewed the benefits of oral feeding options in people with dementia review-Systematic review from 1/90-10/09-13 controlled trials on use of supplements-12 controlled trials on assisted feeding or other interventionsConclusions: High caloric supplements and other feeding options can help people with dementia with feeding problems to gain weight. “These treatments can be offered alone or in combination as an alternative to tube feeding.”

Oral Feeding Options for People with Dementia: A Systematic Review

(Hanson et al., 2011)

• Three studies testing appetite stimulants demonstrated low-strength evidence of benefit

• One study found that dronabinol improved weight and improved disruptive behaviors (Volicer, Stelly, & Morris, 1997)

• Randomized study of megestrol acetate or placebo provided to NH residents demonstrated 43% of the intervention vs. 18% of the placebo group gained more than 1.82 kg over 12 weeks but those with advanced dementia were less likely to respond (Yeh, Wu, & Lee, 2000)

Other Nonmedical Interventions

• Chocolate and exercise (Beck, Damkjaer & Beyer, 2008)

• Enhanced dietitian time ( Keller et al., 2003)

• Assisted feeding 2x per day during or between meals (Simmons et al., 2009)

TF vs. Hand Feeding

• Not an either or proposition• Range of options and choices rather than one

decision• Eating and drinking with assistance• Eating or drinking favorites or certain meals• Withholding or withdrawing nutrition and hydration• TF• Time-limited trial• Primary TF supplemented by quality of life eating

What are the Next Steps?

• Identify the goals of care. The goals of care guide everything!!!

• Help guide decision-making• Help transition patient and family toward a

palliative, comfort, or compassionate approach to care

Guiding Decision-Making

• Primary Care Practitioner (PCP) recommendations about feeding tube placement in patients with advanced dementia are influenced by the SLP (Shega et al., 2003)

• Thus, we as SLPs have a powerful influence and have a tremendous responsibility in guiding decision-making

Strategies for Preventing Tube Feeding: Long Term Care

• Conducive to development of relationship with patient and family

• Sit down, LISTEN, provide comfort and support to family • Decision making for feeding problems is among the most

difficult decision in dementia• Thus, SLPs should be prepared to provide effective and

compassionate decision support• Advance care planning is critical in feeding decisions• Lack of advance directives is a consistent risk factor associated

with FT insertion in dementia (Mitchell et al., 2003; Gessert et al., 2000)

Staff Education

• Many doctors are unfamiliar with literature• Many doctors face barriers: attitudinal,

institutional, imposed by healthcare)• Work to change doctors’ knowledge skills, and

practice

Strategies for Preventing Tube Feeding: Long Term Care

• Discussion about feeding decisions should follow an ethical framework (Mitchell, 2007):1. clarify the clinical situation2. establish the primary goals of care3. present treatment options and their risks and burdens4. weigh the options against values and preferences5. provide additional and ongoing decision support

Explore Fully Patient’s/Family’s Goals of Care

• Do they understand what to expect with natural history of the disease and impact on swallowing, eating, nutrition?

• “Does eating bring you pleasure/enjoyment.”• When you think about your medical care, how do you

think about balancing quality of life with length of life?”

• “Would you ever consider a feeding tube.”

Decision-Making

• Patients and families need time to process information

• Decision-making is a process that evolves over time

• Clinicians must make themselves available• Frequent follow-up is critical

Assisting the Family (and Team) with Decision-Making

• What will be beneficial for your loved one?• What are the benefits of ALL options: careful

hand feeding, modified diet, TF, etc.• What are the risks of ALL options: careful hand

feeding, modified diet, TF, etc.

Video Resource for Families: http://www.med.unc.edu/pcare/resources/feedingoptions

Decision-Making In Advanced Dementia(Teno et al., 2011)

• Of approximately 500 family members surveyed– Almost 11% of descendents with dementia had a FT– Risks associated with FT were not discussed in 1/3 of the

cases– More than half of the respondents felt healthcare provider

was strongly in favor of FT placement– The possibility of hand feeding was NOT discussed in

nearly 1/3 of the cases

Decision-Making Process and Support (Mitchell & Lawson, 1999)

• Examined process by which family member or surrogate made decision for long-term FT placement

• Telephone survey to 46 substitute decision makers of TF patients over 65 years

• Physician education was limited to 15 minutes or less in 37% or absent 28.3% of the time

Decision-Making Process and Support (Mitchell & Lawson, 1999)

• 84.8% felt they understood the benefits• Less than half felt they understood the risks• Just over half felt they received adequate

support from the health care team in making the decision

Improving Decision-Making for Feeding Option in Advanced Dementia: A Randomized, Controlled Trial

(Hanson et al., 2011)

• Objectives: To test whether a decision-aid improves quality of decision-making about feeding options in advanced dementia

• 24 Nursing Homes in NC• Methods: Surrogates received an audio or print

decision-aid on feeding options in AD. Controls received usual care.

• 256 residents and surrogate decision-makers

Improving Decision-Making for Feeding Option in Advanced Dementia: A Randomized, Controlled Trial

(Hanson et al., 2011)

• Findings:– After 3 months, intervention surrogates had lower

Decisional Conflict Scale scores than controls and more often discussed feeding options with health care provider

– Residents in the intervention group were more likely to receive a dysphagia diet and showed a trend toward staff eating assistance

– Tube feeding was rare in both groups, even after 9 monthsConclusions: A decision-aid reduced decisional conflict for surrogates and increased their knowledge about feeding options with providers

Family Perspective

• Decision about feeding/eating/nutrition is one of the most stressful events in a family’s life

• Fatigued and overwhelmed• Fear, guilt, and anger are common• Usually faced with making decisions because loved

one has lost capacity• Sometimes arguing/unable to reach consensus

Family Perspective & Conference Issues

• Identify family members/relationships

• Include patient if he/she has some capacity

• Share the hard news• Simple language• Explain why patient is

unlikely to improve• Discuss options of care• Provide cautious optimism

What Else?

• In some cultures the entire family wants to be involved

• Suggest family choose 1 person to be spokesperson and contact person

• If this is not feasible, family may hire a mediator…– Ulterior motives?

Help Family (and Team) Select Reasonable Goals of Care

• Spend more time with family; need time to process information; decision making is a process that evolves over time; frequent follow-up

• Provide them with informational materials:

Decisional support tool: Making Choices: Long-term Feeding Tube Placement in Elderly Patients: A Book and Guide for Substitute Decision-Makers (Mitchell & Lawson, 1999)

• Demonstrate and empower them to participate with:– Careful hand feeding– Focus on pleasure feeds– Don’t force feed– Oral care techniques

Handling Hard Conversations (adapted from Stone-Goldman, 2013)

• Breath and observe your body language - uncross your arms, calm presence

• Listen with respect and patience - try to appreciate what the individual is going through

• Remember that when people are distressed, information is of less use than quiet support - avoid persuading, convincing or arguing

• Don’t impose your own agenda

Paradigm Shift in Goals of Care

• Traditional Goals– Rehabilitative– Compensation– Combination

• Goals of Care in Dementia– Compensate/preserve– Comfort/Compassionate

(palliative) – focus on maximizing QoL

Compensate, Comfort,CHOICE

Palliative Care ≠ Hospice

Palliative• Provides patients &

caretakers w/relief from symptoms, pain, and stress of a serious illness

• Provided by a team• “Extra layer of support”• Useful for any stage of

disease

Hospice• provides patients &

caretakers w/relief from symptoms, pain, & stress of a serious illness

• Provided by a team• Limited to end of life

care

Why a Palliative Care Approach?

• WHO, 2013• IMPROVE PATIENT OUTCOMES• Prevention and relief of emotional, spiritual,

and physical suffering• EARLY IDENTIFICATION through careful

assessment and treatment of problems• Strive to increase participation in activities the

patient finds rewarding: eating, drinking in social and religious activities

Palliative Care(WHO, 1990)

• Provides relief from pain and other distressing symptoms

• Affirms life and regards dying as a normal process

• Offers a support system to help patients live as actively as possible until death

• Uses a team approach to address needs of patients and their families

• Is applicable early in the course of illness…

Communicating Goals of Care and Options and Choice – NOT

Recommendations

Offer Options/Choices (Palecek et al., 2010)

• Orders should stress the patient’s goals of care• Order for comfort or supportive feeding• This order should state what steps are to be taken to ensure

patient’s comfort through an individualized feeding care plan• Comfort feeding through careful hand feeding • “This …offers a clear goal-oriented alternative to tube

feeding and eliminates the apparent care-no care dichotomy imposed by current orders to forgo artificial hydration and nutrition.”

“In light of the patient’s guarded prognosis and poor likelihood of swallowing recovery, he/she

appears to profile as one that would benefit from a non-invasive, compassionate approach with focus

on comfort feeds.”

Individualized Plan of Care

• In light of the patient’s guarded prognosis and poor likelihood of swallowing recovery, he/she appears to profile as one that would benefit from a non-invasive, compassionate approach with focus on comfort feeds. This is is concert with patient/surrogate’s documented/expressed desire for DNI.

• This can be accomplished by…– …– …– …

Other Documentation/Communication Considerations

• Include patient choice in plan of care

• Avoid the descriptors “difficult” or “noncompliant” • Negative descriptors do not acknowledge patient’s choices

Communicating Care Plans (adapted from Krival, 2013)

• Diet: regular consistency, thin liquids, with thickened liquids as needed for comfort/ease.

• Pt requires total assistance with meals and medications. He needs to rest to breathe between bites and sips.

• If pt is distressed on thin liquids (signs: coughing, frowning, grimacing, panting):– Take longer rest breaks so he can catch breath– Small sips (either close off the straw, or use a cup to control the

amount).– Offer thickened liquids. This should be the last thing you try.

Communicating Care Plans (adapted from Krival, 2013)

• Pt will have good days and bad days. Sometimes he/she is more alert and able to breathe easier. If you feel you have done everything to help him/her (softer foods, thickened liquids, etc.) but that it is not comfortable for pt to eat, let the nurse know. You and the nurse can decide to hold the tray until he/she is more awake and alert.

• We understand that pt may aspirate at times, and that none of us may be able to prevent it. The goal is for him/her to be comfortable eating and drinking, and for him/her to eat and drink as much or as little as he/she wishes.

Challenges of Decision-Making

Best availableevidence

Patient wishes

Clinician’s knowledge &experience

Support in Dementia-Dysphagia Ethical Decision-Making

• ASHA Code of Ethics• ASHA Roles of SLP in Swallowing and Feeding

Disorders (2002)• Knowledge and Skills Needed by SLPs

Providing Services to Individuals with Swallowing or Feeding Disorders (2002)

Other Support and Considerations

• Have you discussed your concerns with other care providers? Provided education?

• Have you documented with supporting data?• Ethics Committee or Medical Review Board?

Resources for the Clinician

• Oral Feeding Difficulties and Dilemmas: A Guide to Practical Care, Particularly Towards End of Life (Royal College of Physicians and British Society of Gastroenterologists, 2010)

• Decisional support tool: Making Choices: Long-term Feeding Tube Placement in Elderly Patients: A Book and Guide for Substitute Decision-Makers (Mitchell & Lawson, 1999) http://decisionaid.ohri.ca/decaide.html

• Facing eating difficulties in end-stage dementia (Gillick & Mitchell, 2002)

American Geriatrics Society (AGS) 2013 (May) Feeding Tubes in Advanced Dementia Position Statement

AGS Positions (2013)

1. Percutaneous FTs are not recommended for older adults with advanced dementia (AD).

2. Efforts to enhance oral feeding by altering environment and creating patient-centered approaches to feeding should be part of usual care for older adults with AD.

3. TFing is a medical therapy that can be declined or accepted by a patient’s surrogate decision maker in accordance with advanced directives, previously stated wishes, or what it is thought the patient would want.

AGS Positions (2013)

4. It is the responsibility of all team members for residents in LTC settings to understand any previously expressed wishes of the patient regarding TF’ing and incorporate these wishes into the care plan.5. Institutions should promote choice, endorse shared and informed decision-making, and honor patient preferences regarding TFing. They should not impose obligations or exert pressure on patients or providers to institute TFing.

Make Sure You Haven’t Overlooked These Opportunities

• Maximizing care plan for patient quality of life• Attending to family needs• Attending to your needs• Avoiding being judgmental

Other Comfort

• Knowing that comfort (palliative) care focuses on life. Comfort care (palliative) patients live longer and better

• Recognizing that you did no harm and assisted the patient and family in adding life to their remaining time

Bow Out vs. Transition Out

• Once agreed upon, if no role for active SLP involvement:– Offer means of continued support for the patient

and/or family – Provide easy contact info

Case Presentation 1• Consult from PCP: “Elderly man has difficulty swallowing

some foods, especially meats, despite modifications such as grinding. Your assessment and recommendations will be appreciated.”

• 92 year old man with history of dementia residing with family• Family manages medication. Pt walks alone at home;

otherwise uses a cane or walker.• Dysphagia complaints: Per daughter, 6 month history of c/o

food sticking, coughing with liquids for at least 6 months. • Only mild gradual weight loss; no recent chest colds or PNA

Case Presentation 2

• 84 year old man presented to ED with diagnosis of advanced dementia admitted with UTI

• Declining ability to perform ADL’s, FTT/refusing food and feeding, dehydrated

• Lived alone, no known family or advanced directive

Case Presentation 3• 84 year old patient with Parkinson’s admitted for altered MS and poor oral

intake on 2/12/13 – limb jerking, hallucinations; family report of declining functioning at

home– Multiple ED visits during prior month with comparable presentation– Well known to Speech service for a 3 year period for both LSVT and

periodic dysphagia evaluation and intervention– AD on file stating DNR/DNI

• Most recent VFSS 1 month ago demonstrated:– moderate oropharyngeal dysphagia with silent, thin liquid aspiration – aspiration managed with 10cc Provale cup or nectar thick liquids – patient clearly expressed wishes regarding QoL and against Provale

cup and thickened liquids

Case Presentation 3

• No clearly identifiable reason for delirium and poor oral intake

• Wife, daughter, and care giver present at time of bedside assessment

• Clinical Swallowing Observations: psychosis/delirium; unsafe for any oral intake; family ADAMANT about desire for comfort care

Conclusions• Successful management of the patient with

dementia is complicated• SLP must assume an early and active role

throughout the course of disease• Must carefully assess and consider patients

rights, wishes, and QUALITY OF LIFE• Goals should stress the patient’s goals of care• Caregiver cooperation and diligence is critical• SLP must assume a leadership role

My (Our) Goal

To work towards the creation of system that I (we) would want caring for my (our) loved ones and me.