9/11/2015 course objectivesasha.2015 32 9/11/2015 9 patient centered treatment •involves both the...

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DementiaWelcome to their World

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Course Objectives

1. Describe disease process and multiple facets of dementia

2. List and explain the impact of the disease on functional areas

3. Discuss and understand a comprehensive treatment approach for people living with dementia.

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Why it’s important to know specifics?

• Concerns regarding quality dementia care/present national focus

• General focus is too narrowly focused on Alzheimer’s disease and not more globally on dementia

Dementia Care:The Quality Chasm,

Dementia Initiative, 2013

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Why it’s important to know specifics?

Cont.• Lack of adoption and use of practices that have been demonstrated to provide the most humanistic and positively oriented approach which is a person-centered approach

• No focus on preferences, interests, fun, social connections.

• Too focused on ADLs



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Facts About Dementia

• Definition:

Symptoms typically characterized by a loss of cognitive intellectual ability, impairment of memory, and brain changes affecting areas such as language, reasoning, and judgment severe enough to interfere with everyday function.



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Facts About Dementia

• Cost of Care in 2012 was an estimated 200 billion with 140 billion dollars paid by Medicare and Medicaid. Latest estimate - costs could jump to 1 Trillion in 3 years.

• Prevalence of Alzheimer’s alone is expected to grow three-fold over the next 35 years(Alzheimer’s Association, 2012)

• Global estimate for current population is 47 million – likely double every 20 years



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Types of Dementia

• When at all possible, the type of dementia needs to be identified by the physician in order to provide patient-centered care.

• There are 8 common types of dementia

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Alzheimer’s Disease

• insidious onset; more likely after age 65

• progressive course; slow course with plateaus not unusual

• can be familial or non-familial

• can coexist with other conditions, such as Parkinson's disease

ASHA, 2015

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Communication

• aphasia is common, starting as either fluent or non-fluent; semantic system is most affected; syntax and phonology are affected later

• language comprehension deficits, difficulty with topic maintenance, echolalia, lack of meaningful speech, gradual progression to mutism

ASHA, 2015

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Behaviors

• depression, insomnia, incontinence, delusions, agitation, restlessness, hyperactivity,

• disorientation, delusions of persecution, loss of initiative

ASHA, 2015

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Multi-Infarct Dementia

• caused by multiple strokes, some without noticeable clinical signs

• symptoms may begin suddenly, often progressing in stepwise fashion after each small stroke

• sometimes co-occurs with Alzheimer's disease

ASHA, 2015

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Diagnosis

• vascular disease resulting in damage to areas of the brain due to diminished blood flow

• symptoms similar to Alzheimer's disease makes it difficult to make a firm diagnosis

ASHA, 2015

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Communication

• motor speech disorders are prominent; slurred speech

• word-retrieval difficulties

• difficulty following instructions

ASHA, 2015

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Behavior

• depression and mood changes

• confusion, problems with short-term memory

• wandering or getting lost in familiar

places

• impaired coordination or balance

ASHA, 2015

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Lewy Body Dementia (LBD)

• periods of normal cognition alternate

with abnormal cognition

• progressive course, often rapid

ASHA, 2015

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Communication

•motor speech disorder with

hypophonia

• disorganized speech

ASHA, 2015

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Behavior

• visual and auditory hallucinations

• pronounced fluctuations in alertness and attention; periods of delirium (confusion) and daytime drowsiness

• Parkinsonian motor symptoms (e.g., rigidity and loss of spontaneous movement)

ASHA, 2015

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Frontotemporal Lobar (FTD) Pick's Disease

• insidious onset, more likely before

age 65

• progressive course, often slow

ASHA, 2015

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Communication

• reduced speech output; speech is

non-fluent

• progressive decrease in expressive vocabulary; word-finding problems

• reduced spontaneous conversation

• echolalia and meaningless repetition of phrases

ASHA, 2015

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Behavior

• wide range of behavioral changes, especially frontal lobe variant

• executive dysfunction (in frontal variant)

• behavioral (personality) changes and disregard for social conventions

• uninhibited behavior, including inappropriate social behavior

• depression, irritability, mood fluctuations

ASHA, 2015

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Frontotemporal Lobar (FTD) Primary Progressive Aphasia

• may be caused by a wide variety of underlying diseases

• possibly inherent genetic preprogramming

• gradual loss of language function in the context of relatively well-preserved memory, visual processing, and personality until the advanced stages

ASHA, 2015

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Communication

• symptoms usually begin with word-finding problems and progress to impaired grammar (syntax) and comprehension (sentence processing and semantics)

• symptoms associated with impaired speech production can also be present (e.g., dysarthria and apraxia)

ASHA, 2015

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Behavior

• immobility or slow voluntary movements, diminished facial expression, resting tremors, increased muscle tone, and resistance to movement

• disturbed gait and posture

• memory problems, confusion, hallucinations, executive dysfunction

• apathy, depression, social withdrawal, anxiety

ASHA, 2015

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Huntington’s Disease

• inherited

•gradual onset

•rate of progression and age of onset vary from person to person

ASHA, 2015

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Communication

• naming difficulties, use of shorter/simpler utterances, grammatical errors, difficulty comprehending subtle aspects of discourse

• dysarthria of the hyperkinetic type, including variations in loudness, mono-pitch, and harsh voice quality

• mutism in final stages

ASHA, 2015

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Behavior

• excessive complaining, eccentricity, irritability, emotional outbursts, violence, and extreme confusion in final stages

• spasmodic, involuntary movement of limbs, neck, and head

• impaired memory, attention deficits, slowness with all intellectual activities

ASHA, 2015

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Multiple Sclerosis

• chronic neurological disease that

affects the central nervous system (CNS)

ASHA, 2015

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Communication

• dysarthria including unclear

articulation, difficulty controlling loudness, poor pitch control

• problems comprehending and using language related to cognitive changes

ASHA, 2015

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Behavior

• fatigue, vision problems, weakness,

gait, balance and coordination problems, pain

• dizziness and vertigo

• emotional changes, anxiety, depression, cognitive dysfunction

ASHA, 2015

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Behavior

• activities of daily living, judgment,

insight, and behavior are relatively, if not totally, spared

ASHA, 2015

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Parkinson’s Disease

• sporadic; gradual course

• average age of onset 60 years, although a juvenile form exists

• reported incidence of dementia in

patients is variable across studies

ASHA, 2015

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Communication

• hypokinetic dysarthria (hypophonia, rapid rate, voice tremor, mono-pitch, and mono-loudness)

• naming problems, impaired discourse comprehension

• micrographia (writing in extremely small letters)

ASHA.2015

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Patient Centered Treatment

• Involves both the physical and psycho-social treatment for patients with Dementia

• The “how” treatment is delivered is just as important as what services are delivered.

• Respectful and close relationship with patient are vital while using their life history, interests, wants and needs to determine a treatment path.



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Treatment

• Society has a different view for patients with dementia versus patients with other medical declines

• Usually a dementia person is looked at for meeting only basic needs and not holistically like other patients for enhancement/stimulation of all aspects of their daily living



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Treatment

• In order to be successful in providing person centered care for Dementia patients, a framework of multiple facets must be in place.

• In 2010, the CEAL (Center for Excellence in Assisted Living) along with other national organizations established the framework to include:



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Framework

• Core Values and Philosophy

• Structural Elements

• Operational Elements

• Personalized Practices



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Person Centered Care

• Core Values and Philosophy: Is the strong foundation to support person centered care through meaningful relationships, knowing the individual and their uniqueness, focusing on the person’s strengths and understanding their world with dementia



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• Structural Elements must be present:

▫ Relationships and Community

▫ Owner/Operator

▫ Leadership

▫ Care Partners/Workforce

▫ Services

▫ Meaningful Life and engagement

▫ Environment

▫ Accountability



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• Must have these key structures to be successful

• For example: If no buy in from workforce, then the care will never reach the level that perhaps owner wants

• If staff not held to standards set forth for person centered care then failure will result



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• Operational Practice: Make the structural elements functional by providing education, environment and leadership to carry out person centered care

• For example: Consistent assignments to individuals with dementia so relationship can be established



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• Personalized Practice: Individualized care to support the person with dementia

• For example: Knowing and understanding that the patient’s routine was late riser and night owl activity. Worked night shift when younger. Base treatment and activities around this schedule.

• Cannot get to this level of care without establishing all other areas first



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Core Values and Philosophy-Foundation

• Must be adopted from Owner to staff to families:

▫ Every person has his/her meaning of life, personality, spirit, and character

▫ Caregivers must know history, interests, personal preferences and needs of patient to allow the person to experience life at all stages of dementia

▫ Focus on strengths of person

▫ Enter their world so you can understand, communicate and interpret their meaning of behavioral expressions



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Structural Elements-Framework

• Relationships and Community

▫ Individuals with dementia need familiar relationships and a sense of belonging which in turn adds comfort, meaning and context to their life



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Framework

• Governance

▫ Owner/Operators/Board members are the ultimate decision makers and are essential for success of program

▫ Without their active involvement and commitment to establish, implement and sustain person centered care, the program will not flourish



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Framework

• Leadership

▫ Executive and Management members are the key to keeping on track and providing person centered care

▫ Delegation and empowerment of staff will allow for successful outcomes and higher self worth to retain employees



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Framework

• Care Partners/Workforce

▫ Recognize and promote staff with specialized training and commitment to dementia population

▫ Seen as integral part for program to be successful

▫ They are the familiar relations that the residents will rely on and work with daily

▫ Give the proper education and training to care partners so they can provide the best service to the residents



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Care Partners

• Have appropriate number of staff on all shifts to perform duties effectively and supportively for the residents

• Have consistent assignments so relationships form and familiarity to routine is known



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Framework

• Services

▫ Providing care that is individualized with preferences, values, resident choices and lifestyle, and needs to support their daily routine

▫ Compassion should be visible

▫ Goal for services to optimize physical, social, emotional, spiritual and intellectual well being for the person with dementia



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Framework

• Meaningful Life and Engagement

▫ Affirms a person’s sense of self, purpose and self-esteem

▫ Adds enjoyment to daily life

▫ Fosters emotional health and a sense of connection with others

▫ Every person will have a unique need which will make their life purposeful and meaningful

� Ex: Solitude vs. social



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Framework

• Environment

▫ They are multifaceted

▫ Need to incorporate the physical and social/emotional dimensions in their past experiences

▫ Consider design, space (indoor and outdoor), colors, light, sound, furniture and surroundings for person to feel safe, comfortable, warm and engaged.



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Framework

• Environment

▫ It can have a significant impact on the person’s overall well-being and quality of life

▫ Goal is to maximize function while the person is feeling safe and comfortable

▫ Reducing stress with the right kind of environment can help with appropriate stimulation for the patient and decrease negative outcomes or behavior expressions



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Framework

• Accountability▫ Must attend to outcomes and that they are the desired ones for the program

▫ Must be an effective program that positively impacts dementia patients and their quality of life

▫ Regular assessment of program through outcomes is vital

▫ Check systems, personnel, operations and culture on a consistent basis (i.e. satisfaction surveys by resident, family and staff)



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Framework

• The structural elements listed previously are linked to one another for success and must be in place to support the program but the individual practices should be flexible and creative with input from staff, residents and family



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Relationships

• Essential component of the patient’s well – being

• Successful relationships are based on respect, shared experiences, trust, having each others back and mutual enjoyment

• Time to build the relationship is vital to sustain the relationship- give your staff time to spend with their patients to nurture this

• The bonds of a relationship gives the person a sense of belonging



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Behavior Expressions

• 90 percent of all persons living with Dementia experience some form of behavioral disturbance during the course of the illness

• Can be one of the most challenging aspect of care

• It is an abnormal way to communicate unmet needs or immediate issues that a person with dementia utilizes with care partners or others



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• It can mean a basic need is not being met such as hunger , thirst , or warmth OR the person may be in pain or stomach is upset etc. to name a few

• If you can view the things from the perspective of the person with dementia, then you may be able to uncover the cause of the behavior being expressed



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Behavior Expression(BE)

• BE can occur at any stage of dementia

• Reasons for BE could be:

▫ Overstimulation in environment

▫ Disorientation

▫ Noise

▫ Tired

▫ Pain

▫ Lonely



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Behavior Expression

• Very often care givers treat the distress but not the larger issue (i.e. antipsychotics)

• In 2011, the Office of Inspector General discovered that 1 in 5 claims demonstrated antipsychotic drugs were administrated that did not meet the standards of CMS for drug regimens

• In other words, 20% of patients received antipsychotics that did not need them



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• It is vital to get to the root cause of the BE so the issue is resolved and quality of life improves.

• Medication or use of antipsychotics may only treat the behavior and not the underlying problem

• Utilize personalized practices to see if BE can be reduced and issue resolved



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Personalized Practices

• Individualized approach based on known routine, preferences, needs and lifestyle to reduce BE

-Communication and interaction with patient

-Patience and authentic approach to build trust

-Involvement of Family and Friends after educated on best approach and practice



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• Executive staff must make sure educational and financial resources are available to train and implement program while leaders are providing education, coaching and modeling for the care partners

• Empower the educated families to give insight and feedback in care of each person



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• Staff stability and consistency- reduce staff turnover through education, support, recognition and celebrating success



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Meaningful Life and Engagement

• To improve engagement in daily activities consider these suggestions:▫ View and Treat persons with dementia as adults▫ Art can be a way to express self, reduce stress, create things, show meaning, and connect with others

▫ Children of all ages can stimulate interaction and provide an interesting and emotional benefit to them especially if this has been a part of their life in past



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• Music that is familiar to the patient can be pleasant and reduce the environmental stimuli that may be frustrating to them. It can evoke positive feelings and reduce stress. It can introduce familiarity into a new environment.

• Pets allow for close physical contact that may be comforting and friendly. They tend to open a patient up and have them express things positively while alleviating boredom or loneliness



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• Social interaction fosters a sense of well –being

▫ Laughing, singing, or group activities can be calming or energizing for a person with dementia

▫ Be part of a group where others are dealing with same thing can help

▫ Be aware of past routines and if large groups are a personal desire and if environment is too over stimulating



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• As stated previously, having knowledge of one’s preferences will dictate the right approach for care

• If a person was a loner when they were younger, once they move through stages of dementia does not mean all the sudden they want to be part of all the activities…they may benefit more with 1:1 interactions



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• Many people feel a connection to something beyond their own person. This need can be spiritual, religious or a sense of community

• These memories, rituals, smells, sounds, icons can bring a sense of comfort as part of their routine



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Program Considerations

• Education and Comprehensive Risk Management to reduce re-hospitalizations and anti-psychotic use

▫ Educated nursing staff/caregivers to allow for early recognition of infections and exacerbations of co-morbidities and treat on site

▫ Educated and involved family/caregivers

▫ Have pre-determined life plan



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• Start with three care areas and build from them:

▫ Nutrition and Fluid intake

▫ Pain Assessment and Management

▫ Engagement in Daily Activities



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• Dietary Intake

▫ Poor intake (food and fluid) can impact negatively a person’s well being and health

▫ Monitor and assess frequently person’s with dementia nutrition levels and adapt care plans to keep residents hydrated and nourished

▫ Consider preferences and abilities with diet

▫ Mealtimes need to be pleasant, stimulating and bonding opportunities



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• Pain Management

▫ Most under-diagnosed and treated issue for person’s with dementia

▫ Poor ability to communicate pain

▫ May manifest into behavior expression and lead to inappropriate administration of anti-psychotics

▫ Assess and treat daily through use of pain scales/pictures



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• Pain Management

▫ De-stress the environment

▫ Know risks for patient that heightens pain

▫ Involve therapy

▫ Educate all caregivers on best care focus



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• Social Engagement

▫ Daily offerings of preferred activities that mean something to resident

▫ Be mindful of resident wishes-if they have always been a loner…let them be part of 1:1 activities



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Program Goals

• Patient Centered Care• Involve Care “Partners” for optimal resident functioning and quality of life

• Proactive approach to care to meet shifting needs of resident and prevent possible problems

• Check your success through ongoing assessment of the program and analyzing outcomes



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Strategies for Care

• Because Dementia affects many areas of function at different rates depending on what stage of the disease a person exists, it is important to understand what to expect and modify approaches and treatment to gain as much success/independence as able

Goodwin, Heather, Creative Interventions

For Dementia, HOMECEU

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Strategies for Care

• People with Dementia show changes in:

▫ Memory- STM, LTM, WM (working memory)

▫ Cerebral Cortex- atrophy

▫ Learning – esp. new

▫ Behaviors- yelling, hoarding, wandering etc.

▫ Motor Processing and Execution-ex. aphasia

▫ Coordination – decline or lack of

▫ Response to Drug interventions- side effects



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Strategies for Care

• Persons with Dementia typically have functions that are last to decline:▫ Residual Praxis and Knowledge▫ Music and Art▫ Humor and Intelligence▫ Honesty and Innocence▫ Physical Strength▫ Resourceful▫ Recall of traumatic or important events



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Strategies for Care

• Early Stage for Dementia▫ Compensatory Strategies

� Similar to 18-20 y.o. mental abilities� Repetition is a substitute for memory� Observe and Measure behaviors� Prevent rather than intervene� Teach the client within capability� Establish routine� Change caregiver for greatest response� Alter approaches if needed� Modify environment for safety� May need written, verbal or tactile cues� May need set up assist or supervision



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Early Stage Strategies

• Can live at home alone

• Residual ability of routine up to 1 month

• Independent in self care

• Loss in job skills and organization

• Still can plan before act

• Can be spontaneous and creative

Goodwin, Heather, Creative Interventions For Dementia, HOMECEU Connection.com

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• Past Memory Book- past photos• Patient Profile- ADL routine, hobbies, likes, primary language etc.

• Reality Orientation- different than memory book, work on daily, recorder, appointments, calendar, IPAD activities, awareness of awareness

• Adult Day Care- 3-5 x a week, social engagement, routine



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• Client Support Groups

• Grief management- Behaviors similar to stages of grief (Denial, Anger, Bargaining, Depression, Acceptance)- can be cyclical and not in above order

• May need help with Financial Interventions

• Start having problems with driving



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• Reduce responsibilities

▫ Help with household chores

▫ Move to less intense duties at work

▫ Stick to small errands and routine routes with driving

▫ Organize or help with meal prep, medicine management, appointments, emergency planning (life alert), guardian angel



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Strategies for Care

• Mid to Late Stage with Dementia▫ Remedial Strategies� Brain games� Practice makes Praxis� Physical cues� Behavior Modification� Sensory Stimulation� Multi-sensory environments� Caregiver education� Participation in Independent/ Group/ 1:1 activities



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Mid Stage Strategies

• Profile of mental capability of 12-13 y.o.▫ Can learn with repetition, residual abilities decrease (2 week window)

▫ Routine is substitute for memory▫ 24 hr supervision, home care▫ Set up for tasks ▫ Can complete task with modeling▫ Family notices change, need education



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• May start to see behavior/ refusals:▫ Try different approach-indirect vs. direct, calm, smile▫ Re-approach in 5 mins.▫ Guided choices▫ Involve team members they like▫ Breakdown cues to timeframe▫ 1 step directions- increase difficulty following this stage

▫ Daily intervention is best▫ Be aware of over or under challenging, over or under stimulation and purposeful engagement



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• May see increased social integration and depression

▫ Apathy and agitation may increase

▫ Decrease awareness of surroundings and orientation

▫ Need to engage in activities and environment modification

▫ Depression is most frequent DX with depression-77% of community dwelling, 42% with both have no tx for the depression = results in faster cognitive decline



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• Paranoia

▫ Make sure you validate it

Sequencing declines- work left to right, establish routine with daily intervention for at least 2 weeks

Light meal prep- routine seating, no knife, unplug stove if unsafe, try microwave

Enjoy animal and baby visits

Remember important events and hair appointments



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Late Stage Strategies

• Behaviors increase due to unmet need and lack of ability to communicate it

▫ Assess Behavior

� Figure out what root cause is and plan what can improve it

� CAP sheets: Catalyst for Behavior, Action Plan, Prevention for further issues

Mental Capability of 3-5 y.o.



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• Combativeness, elopement, sun-downing, falls, perseveration

▫ Need total assist for tasks

▫ More difficulty with walking and very little new learning

▫ Involve with low level activities

▫ Hoarding- let them collect things as long as safe, fill container, give dollar if needed, give alternative activities



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• Wandering

▫ May have had a pre-morbid job that involved walking ex. Postman

▫ Aimless wandering may be due to extra energy-take outside or give physical exercises

▫ Modify environment for safety on wander trail

▫ Enhance trail with visual/tactile stimulating items

▫ Disguise exits with wall mural, black rug, gridlines, guiding words, curtain



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• Elopement

▫ Wander guard

▫ Verbal alarm system

▫ Mobile locator

▫ Know wander pattern and keep watch if does not follow trend



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• Music Sessions

• Supervised/ Assisted activities

• Do not limit walking

• Eliminate stressors that may make them wander: Cold temp, change in routine, extra noise/chaos, incontinence

• Wheelchair wandering if physically unsafe



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• Yelling

▫ Studies have shown that giving an appropriate dosage of acetaminophen has helped constant yelling due to relief of pain-pain is overlooked as a catalyst for yelling

▫ Music therapy- can use headphones

▫ Gum if appropriate



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• Eating Difficulties▫ Simple set up- 1 to 3 min STM▫ Routine seating- same people▫ Sweeten food▫ Finger Foods- use of bowls▫ Classical music increases appetite▫ Color red increases hunger and anger▫ Light Blue good background for food▫ Limit adaptive utensils▫ Model eating▫ Oral stim prior to eating ▫ Small portions



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• Agitation▫ Sleep deprivation- keep on Diurnal Rhythm, keep them busy during day –try not to let them sleep, wake up same time everyday no matter what and try to get outside to know difference between day and night

▫ Assess for Depression and Root Cause of Agitation▫ Air Mattress on Bed▫ Music and cognitive games▫ Cooking ▫ Pet Visits▫ Snacks▫ Physical activity▫ Visual stimulation



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• Falls increase

▫ Good activity plan- keep involved and busy

▫ Close supervision

▫ Use of Hip protectors

▫ De-clutter space

▫ Regular exercise



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• Perseveration

▫ Give a sense of completion- ex. Brush teeth- know neuro loop- say done when pause happens

▫ Looser clothing for easy on and off

▫ Measured item quantities- collects coffee cups-put in bin and when full – all done



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Strategies for Care

• End Stage with Dementia

▫ Palliative Strategies

� Comfort measures

� Physical assistance

� Caregiver training

� Caregiver respite

� Diversion activities

� Meaningful activities



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End Stage Strategies

• Typically bed bound, varying alertness levels, sensory deprivation, rigidity (contractures may be present), skin integrity may be compromises, hospice care

▫ Sensory Stim- give 60 seconds to process, try again (gustatory, proprioceptive, tactile, olfactory, auditory, visual, vestibular)



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End Stage Strategies

• Meaningful bed activities-pet visits, family visits, 1:1 activities, sensory stim

• Multi-sensory environments• Get people outside- human touch• Modify environment so they can see outside, mobiles, music, sitting vs. laying position, fuzzy blankets, stuffed animals, aromatherapy

• Assess pain and tx appropriately• Manage rigidity and contractures-PROM and story telling



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Activity Resources

• Thedementiaspecialist.com- 2500 activities

• AAI-Nature.org

• Flaghouse.com

• Snoezeleninfo.com

• Alz.org

• S&S worldwide

• Mind-start.com



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General Strategies

• Increase independence/give control• Eliminate poor lighting, shadows, and glare• Reduce excess noise• Don’t argue, correct, convince, and take things personally• Acknowledge and validate feelings• Distract with food, drink, or activities• Identify comfort items• Label items• Provide “just right” assistance• Indirect cues and observation• Keep them Engaged!



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Other References

• Bonner, Alice, National Partnership to Improve Dementia Care in Nursing Homes, CMS, July 2013

• Dementia Care Practice: Recommendations for Assisted Living Residences and Nursing Homes, Alzheimer’s Association, accessed July 2015

• APTA.org

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