Research Into Practice: The Latest Findings on Dementia Care in Assisted Living Sponsored by:
Research Into Practice: The Latest Findings on Dementia Care in Assisted Living Sheryl Zimmerman, PhD Stephanie Miller, Christopher Wretman, Kimberly Ward, Philip Sloane Co-Director, Program on Aging, Disability, and Long-Term Care University of North Carolina (UNC) Cecil B. Sheps Center for Health Services Research
Patrick Doyle, PhD Corporate Director of Dementia Care, Brightview Senior Living Principal Faculty Member Center for Innovative Care in Aging, Johns Hopkins School of Nursing
Your Perspectives • Please complete the “Treatment for Behaviors, Sleep, and Mood” questionnaire, and score it. • Please complete the “Physical Environment of Assisted Living” questionnaire, and provide it to the facilitator.
Session Overview • Dementia and behavioral expressions • Addressing behavioral expressions • Pharmacological • Psychosocial and environmental • Translation of Evidence-Based Practices
Why Dementia Care in Assisted Living? • 71% of residents have cognitive impairment • 29% mild (recognized by 26% of staff)
• 23% moderate (recognized by 61% of staff) • 19% severe (recognized by 90% of staff)
Where in Assisted Living? • 17% of assisted living residences have a special care unit; 9% are dementia-only communities
• 14% of residents live in special care • 46% of those with severe cognitive impairment
Why Dementia Care in Assisted Living? • 38% of residents have “behavioral expressions” • Agitation, refusing care, wandering, noisy
• 57% of them have a medication prescribed for their behavior (22% of all residents)
Medication Prescribed
All Residents
No Cognitive Impairment
Mild Cognitive Impairment
Moderate Cognitive Impairment
Severe Cognitive Impairment
57%
42%
46%
56%
69%
Medications for Behaviors • Limited efficacy • Adverse effects (antipsychotics) – Acute myocardial infarction (risk = 2.2) – Stroke (risk = 3.5) – Mortality (risk = 1.5 – 3.2)
• FDA: Block-box warning • CMS: antipsychotic medications may be considered … only when symptoms present a danger to the individual or others … and only after medical, physical, functional, psychological, emotional, psychiatric, social and environmental causes have been identified and addressed
Participating Communities (N=250) Characteristics of Participating Communities) N (%) or Mean (SD) Size (beds) For profit Purpose-built Chain affiliation (another AL) No dementia/memory care Some dementia/memory care Dementia/memory care only RN on site LPN on site Either RN or LPN on site
54.3 (31.4) 176 (71%) 167 (70%) 101 (41%) 136 (55%) 85 (35%) 25 (10%) 152 (61%) 205 (82%) 222 (89%)
Dementia-Friendly Environments SAFETY and SECURITY Entry secured by a keypad or other safety locking device that prevents elopement Secure outdoor area that has room for seating and protection from the sun Ability of staff to easily see into the majority of dining and lounge room areas ORIENTATION-FOCUSED ENVIRONMENT Personalized signs/symbols/displays to identify and differentiate bedrooms Ability to see inside of a common area as soon as exiting bedroom Ability to see a door leading to a toilet from the majority of dining and lounge areas Public bathrooms clearly marked with a symbol or words Lack of long hallways ATMOSPHERE Lack of a public address, paging, or call system with bells or loudspeakers Lack of noise from a loud TV/radio, person screaming/calling out, loud speaker/alarm Lack of glare Lack of unpleasant odors SENSORY STIMULATION Clearly defined, unlocked indoor circular path that allows walking without restriction Intentional visual stimulation (pictures, patterns, vistas) in halls and common areas Intentional tactile stimulation (things that can be touched) in halls and common areas
Dementia-Friendly Environments
• Environments are moderately dementia friendly (scored 60-70) • Environments are significantly more dementia-friendly in dementia areas • Except in relation to atmosphere (sounds, sights, and smells)
• Similar differences exist in dual-care communities, but to a lesser extent
Administrator Attitudes (N=248) Is it a good idea to have a standing PRN order for medication in case someone with dementia gets agitated/has an outburst?
33%
67%
Administrator Attitudes (N=248) Is it a good idea to have a standing PRN order for medication in case someone with dementia gets agitated/has an outburst? No 33%
67%
Yes
Medications Psychotropic Medication Use (N=250 Sites) All Residents (N=13,602)
Residents with Dementia (N=5,318)
Antipsychotic Antidepressant Anti-epileptic/mood stabilizer Anxiolytic/hypnotic Dementia drugs (e.g., ACHEI)
2,421 (18%) 6,264 (46%) 2,567 (19%) 3,322 (24%) 3,595 (26%)
1,430 (27%) 2,894 (54%) 961 (18%) 1,570 (30%) 2,821 (53%)
Any non-dementia psychotropic
8,798 (65%)
3,925 (74%)
Type of medication
Family Report Family Report of Residents Taking Antipsychotic (N=288) Number (%) Knew on an antipsychotic
243 (84%)
First medication reported Prescriber: Psychiatrist
95 (40%)
Timing: Before move-in
113 (48%)
After move-in Not known
116 (49%) 8 (3%)
Alternatives: Evidence-based “Nonpharmacological� Practices
Sensory Practices aromatherapy, massage, multi-sensory stimulation, bright light Psychosocial Practices validation therapy, reminiscence therapy, music therapy, pet therapy, meaningful activities Structured Care Protocols bathing, mouth care
Sensory This is a text box. Practice Evidence
Presumed Mechanism of Action
Implementation
Aromatherapy
Moderate, mixed • Positive for agitation
Nervous system regulation; social and physical contact
Well accepted, no known harmful effects, low investment
Massage
Small • Positive for agitation, aggression, other
Physiological response and social/physical contact
Well accepted, no known harmful effects (but honor preferences), low investment
Multi-sensory stimulation
Large • Positive for agitation, anxiety, other
Social contact
Well accepted, no known harmful effects, moderate investment
Bright light therapy
Moderate, mixed • Positive for agitation, depression, sleep
Change circadian rhythm
Acceptance varies by light source, some potential for harmful effects, moderate investment
Psychosocial Practice This is a text Evidence box.
Presumed Mechanism of Action
Implementation
Validation therapy
Small, mixed • Positive for agitation, apathy
Alleviate negative feelings, enhance positive feelings
Well accepted, no known harmful effects, low investment
Reminiscence therapy
Moderate • Positive for mood, depression
Increase well-being, provide pleasure and cognitive stimulation
Well accepted, no known harmful effects (but focus on positive), moderate investment
Music therapy
Moderate • Positive for anxiety, agitation
Promote well-being, sociability, reminiscence, reduce anxiety/ stress, provide distraction
Acceptance varies, no known harmful effects, moderate investment
Pet therapy
Small, preliminary • Positive for agitation, apathy, disruption
Socialization/bonding, emotional support, sensory stimulation
Acceptance varies, may be negative effects, low/moderate investment
Meaningful activities
Moderate, mixed • Positive for agitation
Enhance quality of life, social interaction, self-expression, self-determination
Acceptance varies, few negative effects, low/ moderate investment
Structured Care This is a text box.
Practice
Evidence
Presumed Mechanism of Action
Implementation
Mouth care
Small, preliminary • Positive for careresistant behaviors
Reduce threat, anxiety fear, and pain
Well accepted, no known harmful effects, low investment
Bathing
Small • Positive for agitation, aggression, other
Reduce fear, pain
Well accepted, no known harmful effects, low investment
Attitudes Non-pharmacological Practices • Care practices that don’t use drugs should be used more often than they are currently used. • Care practices that don’t use drugs should be used before using drug treatments. • Psychotropic medication for people with dementia and agitation should be used after everything else has been tried. • In my treatment of agitated behaviors, I treat the cause of the behaviors. • For many agitated behaviors, there are no medication treatments.
Pharmacological Practices • Psychotropic drugs work well for behavior problems. • Most behaviors can’t be handled by non-drug treatments. • Drug treatment is far more important than non-drug treatment.
Health Care Supervisor Attitudes All communities (N=247) Mean (SD)
Nonpharmacologic (range 1-6) Pharmacologic (range 1-6)
4.6 (.6)
3.0 (.8)
• Supervisors are significantly more positive toward nonpharmacological treatments than pharmacological treatments
Health Care Supervisor Attitudes All communities (N=247)
Some No dementia dementia beds beds (N=114) (N=133) Mean (SD) Mean (SD)
Mean (SD)
Nonpharmacologic (range 1-6) Pharmacologic (range 1-6)
4.6 (.6)
4.8 (.5)
4.5 (.7)
3.0 (.8)
2.9 (.8)
3.0 (.8)
• Supervisors are significantly more positive toward nonpharmacological treatments than pharmacological treatments • Supervisors in communities with dementia beds are significantly more positive toward non-pharmacological treatments than those without dementia beds
Health Care Supervisor Attitudes
Health Care Supervisor Attitudes More so, in communities that have the highest prescribing rates, supervisors are consistently more favorable toward non-pharmacological treatments
Person-Centered Practices Person-Centered Practices for Persons with Behavioral Expressions • Familiarity • Use • Practicality
Familiarity
Use
Use? • Do you know … what type of music is best for prevention versus treatment? • Do you know … how long exposure to pets should be to be therapeutic?
• Do you know … what type of aroma is the most therapeutic? • Do you know … when light exposure is most effective?
Use? Sample Descriptions Sensory Practices Lighting: “We have a courtyard” Touch therapy: “Walking by, we pat [his] shoulder”
Psychosocial Practices Pet therapy: “We have birds everywhere” Music: “We have Alexa here and use it” Reminiscence therapy: “We use shadow boxes”
Practicality
Use, Very Practical
Person-Centered Care Challenges Knowledge/training
Touch: “We need education … if it’s appropriate or not, like for pain.” Validation: “I’d love to find training how to do this.”
Resources
Multi-sensory: “We don’t have space.” Pets: “Dogs would be too much maintenance.” “[Robotic pets] are too expensive.” Aroma: “We don’t have the staff.” Touch: “We do it quarterly.”
Person-Centered Care Challenges Families
Music: “Some families won’t offer to help.” Validation: “Families need to be reminded as well.”
Regulations/rules/policies/attitudes
Aroma: “I observed it working in nursing homes; I’m not sure of the rules here.” Robotic pets: “Could be a trip hazard.”
Attitudes
Robotic pets: “It’s fooling a resident; I don’t like that.” Music: “I haven’t seen it work.”
Addressing Care Challenges
Prevention: A-B-C • Consider past situations and behavioral reactions • Engage in care planning
Aroma How it works Molecules that enter the nose or skin pass to other parts of the body. As they reach the brain, they affect the limbic system, which is linked to emotions, behavior, heart rate, blood pressure, breathing, memory, stress, and hormone balance. Aroma can prevent or reduce anxiety, and sundowning, and promote sleep.
Application Lavender oil has been studied most extensively. Administration close to the nose is most effective (e.g., necklace); massage and diffusers are also effective. Diffusers: • Use diffuser with automatic off switch • Insert 200 ml of water, 6 drops of lavender oil • Keep on for 1-2 hours
Bright Light How it works Light regulates the body’s circadian (day-night) rhythm.
Rhythm disturbances can lead to confusion, pacing, and daytime sleepiness. Light promotes alertness during the day, and sleepiness at night. Sunlight, even when filtered through a cloudy sky, can stimulate circadian rhythm.
Application Bright light can be provided artificially (e.g., light boxes) or naturally. Outdoors: • Light is most effective when provided in the morning, between 9:00am -12:00pm • Full daylight: 20 minutes of exposure is sufficient • Overcast: 60-120 minutes may be required
Music How it works
Application
Music promotes well-being by offsetting isolation due to loss of verbal ability.
Calming music is helpful to treat agitation; familiar music is helpful to prevent agitation. Receptive music is more effective than interactive music.
Because musical memory is retained longer than others, it can reduce anxiety through mind activation and memory triggers. Music may reduce stress by creating a sense of familiarity and regularity in the environment.
Receptive music: • Identify and obtain preferred music • Use any audio source, including headphones • Listen for 15-30 minutes
Pets (Robotic) How it works Exposure to pets can release endorphins that produce a calming effect. This can reduce blood pressure, alleviate pain, reduce stress, and improve mood. Pets also promote socialization, provide emotional support, and stimulate the senses. Similar benefits can be obtained with robotic pets.
Application Robotic pets have some movements similar to live pets (e.g., cats meow, move). Engaging with pets: • Treat the pet as a real animal; pet it, brush its fur, and keep it on during daytime hours • Spend at least 15 minutes with the pet • Turn the pet off at night and if live pets are nearby
Number of days (of 56)
Implementation in Four Communities
Note: Different colored bars signify different assisted living communities
Person-Centered Care Challenges • Staff didn’t have time to “pull them out” • Care associates are “ADL focused” • •
“Addressing behaviors is reactive, not proactive; when behaviors come up, our first goal is to calm them down and get back to our task list” “Need to figure out how to incorporate [the practices] into one of our tasks”
• Robotic cats can be used more proactively than other practices •
“You just leave them out”
• Music didn’t need to be personalized
• Aromatherapy was only used in group settings • Some concern about products “going missing”
Translation of Evidence-based Practices What’s holding us back?
Evidence-based Practices 1) Minimize or eliminate the need for and prescription of psychotropic medications to address behavioral expressions 2) Implement evidence-based, person-centered, nonpharmacological practices in daily operations to prevent and ameliorate problematic behavioral expressions 3) Design attractive senior living environments that meet universal design principles and address the needs of people living with cognitive impairment
1) Decreasing Psychotropic Use What’s holding us back?
Attitude-Behavior Lag: Medications • General agreement that non-pharmacological options should be exhausted prior to pharmacological intervention • Increased awareness in senior living of the lack of efficacy of psychotropic medications use for behavioral expressions • Knowledge of the significant risks • Anti-psychotics, benzodiazepines and other psychotropic medications are still commonly used to address behavioral expressions
Differences of opinion • Multiple stakeholders (e.g., family, psychiatrist, social workers, nurse, directors, caregivers) with different attitudes, motivations, and influence related to intervention type
Limited options • Limited options for situations of acute distress • Physically aggressive resident not responding to nonpharmacological approach • Risk to self and others • Limited behavioral health support, local hospital has limited/no psychiatric team • PRN for Seroquel (family & caregivers – “worked in past”)
• Medication or send to hospital? • False dilemma?
Prevention is not in a pill • Can’t cure dementia or behavioral expressions…prevention, prevention, prevention. • Are we doing enough to prevent behavioral expressions? • If not, where do we start? 1. Behavioral expressions always seen as preventable 2. Organization and team take responsibility for solution – “We can do better. Where do we start.”
2) Increasing Person-centered, Nonpharmacological Practices What’s holding us back?
Attitude-Behavior Lag • Attitudes related to non-pharmacological practices and person-centered care have improved • Increased use of non-pharmacological practices to respond to behavioral expressions • Lag in proactive person-centered application
Discrete Treatment vs. Person-Centered Practice • Not all methods of implementation are created equal • Reactive and discrete (i.e., the non-pharma pill) • Proactive, uniform and passive (e.g., robotic cats on the tables) • Proactive, customized and active (e.g., Music & Memory)
• Goal: Implement person-centered practices to enhance well-being not just to stop future or current behavioral expressions
• Person-centered implementation requires a greater individual and organizational commitment (time, money, effort)
Buy-in of all stakeholders • Address familiarity, use, practicality • Communicate WIIFM- Care partners are incredibly busy and have multiple demands on their time • The more complex the practice the more significant the buy-in needs to be…
• Not knowing (or agreeing with) the WHY AND HOW can hinder even the simplest non-pharmacological practice
Unclear implementation guidelines
• After buy in, care partners still need clear, concise instructions for the nonpharmacological practice and their role for implementation
Music Application
Barriers
Calming music is helpful to treat agitation; familiar music is helpful to prevent agitation. Receptive music is more effective than interactive music.
More education needed: • WIIFM - reduces anxiety, improves mood & engagement • Visually show impact • What type & delivery helps most
Receptive music: • Identify and obtain preferred music • Use any audio source, including headphones • Listen for 15-30 minutes
Complex Logistics: • Personalization takes time • Can be expensive • A lot of technology to track • Headphone sensitivity • Proactive, uniform, passive
Music - Solution • Mind & MusicTM program was developed to infuse music into our communities in a proactive, person-centered manner • Included both passive and active elements of personalized music • Don’t rely solely on headphones to play personalized playlists
• Developed a low-cost, easy to use music technology • All in one implementation kit • Limited the amount of technology and steps needed to run the program
• Simultaneously released interactive training focused on how to and WIIFM • Partnered with families and volunteers to create each resident’s playlist to reduce burden
Bright Light Application Bright light can be provided artificially (e.g., light boxes) or naturally. Outdoors: • Light is most effective when provided in the morning, between 9:00am -12:00pm • Full daylight: 20 minutes of exposure is sufficient • Overcast: 60-120 minutes may be required
Barriers More Education Needed: - Easy and low time investment - Improve resident’s sleep, mood, and behaviors Safety v. Autonomy Imbalance - Required supervision limits application - Sunlight exposure limited during cold or hot weather - Limited programming outside
Bright Light - Solutions • Provide safe outdoor spaces for residents to have independent access to the benefits of natural light and the outdoors • Set clear guidelines for community team to promote resident use of the outdoor space • Make outdoor programs a routine – e.g., exercise in the courtyard each morning • Facilitated walking group on sunny hot or cold days to ensure resident wellbeing • Consider natural light saturation in common spaces during design (and artificial lightening solutions)
3) Designing Dementia-Friendly Communities What’s holding us back?
Dementia-Friendly Environments SAFETY and SECURITY Entry secured by a keypad or other safety locking device that prevents elopement Secure outdoor area that has room for seating and protection from the sun Ability of staff to easily see into the majority of dining and lounge room areas ORIENTATION-FOCUSED ENVIRONMENT Personalized signs/symbols/displays to identify and differentiate bedrooms Ability to see inside of a common area as soon as exiting bedroom Ability to see a door leading to a toilet from the majority of dining and lounge areas Public bathrooms clearly marked with a symbol or words Lack of long hallways ATMOSPHERE Lack of a public address, paging, or call system with bells or loudspeakers Lack of noise from a loud TV/radio, person screaming/calling out, loud speaker/alarm Lack of glare Lack of unpleasant odors SENSORY STIMULATION Clearly defined, unlocked indoor circular path that allows walking without restriction Intentional visual stimulation (pictures, patterns, vistas) in halls and common areas Intentional tactile stimulation (things that can be touched) in halls and common areas
Dementia Neighborhoods • Significant advancement in dementia-friendly design in senior living • Evidence-based environmental design - more progressive • • • •
Concrete, tangible recommendations Much of the evidence based design features are cost neutral Multiple people on design team with expertise related to innovation Innovation focused group
• Not all providers agree on best dementia design – philosophies differ
Dementia-friendly & IL/AL Design Priorities: Room for Compromise? • Long-hallways are difficult to avoid when building larger IL/AL communities. Compromise: • Attend to setting needs • Cue with signage, lighting, and colors to help people navigate
• Visual access to common spaces is limited - size and multiple floors • Common areas should be open and allow for visual access when close • Dignified signage throughout building for wayfinding to spaces • Located common space near entrance, elevators, and stairs
• FFE for aesthetics without consideration of cognitive impairment • Reduce pattern complexity • Use colors to add contrast • Appropriate ergonomics for aging
Takeaways for Practical Application of Evidencebased Research • It is our obligation to provide person-centered care, environments and support of residents living with dementia to enhance their wellbeing and help them thrive • Stronger partnerships between research and industry can benefit all • Research provides an evidence-base to identify practices worth the time and investment • Innovation in practice can inform systematic research • Neither group should wait for the other to make progress
• Always ask: • What is/could hold us back from the progress we seek? • Answer can make us bigger, faster, stronger as dementia care allies
Q&A