Editor's note: This text-based course is a transcript of the webinar, Skilled Nursing Facility Interventions: Applying GEMS States, A Case Study Utilizing Positive Approach To Care, presented by Emily Briggs, OTR/L, RAC-CT.
Learning Outcomes
- After this course, participants will be able to recognize the GEMS® states for appropriate provision of care to those living with dementia.
- After this course, participants will be able to evaluate the need for environmental, social, and physical support for the person living with dementia.
- After this course, participants will be able to distinguish between skilled and unskilled services for a person living with dementia when provided by an OT practitioner.
Introduction
This course is going to build upon the previous course in this series on Teepa Snow and her positive approach to care. The GEMS States will be presented.
GEMS® States Review
- They are called states as they are fluid and can change
- 6 states – Sapphire, Diamond, Emerald, Amber, Ruby, Pearl
- May look different based on the type of dementia, but they are fairly consistent in terms of progression
As a reminder, these states are termed as such due to their dynamic and changeable nature. Unlike several other dementia staging scales, GEM States exhibit a greater degree of fluidity and flexibility. Comprising six distinct stages - sapphire, diamond, emerald, amber, ruby, and pearl - the progression generally unfolds from the top of the spectrum.
As discussed previously, diverse diagnoses can lead to dementia, each presenting variations based on the specific type of dementia affecting an individual. However, in the context of GEM States, their applicability extends universally, offering a consistent framework for progression across different types of dementia.
Case Study Disclaimers
- Follow one person through the progression of the GEMS® States
- Fictional case based on experiences with actual patients
- Receives dementia diagnosis early for the purposes of this case study
- People can live many years following a diagnosis of dementia, so while this case study is condensed, these situations would likely occur over the course of several years
Before delving into the case study, it's essential to provide a couple of disclaimers. Firstly, the upcoming narrative will follow a fictional character's progression through the GEM States and the stages of dementia. Although fictional, this case draws inspiration from real experiences with patients.
In this scenario, the individual receives an early dementia diagnosis, a circumstance tailored for the purposes of this case study. However, it's crucial to acknowledge that many individuals typically receive their dementia diagnosis during the middle stages, around the emerald or amber state. It's becoming more common to diagnose dementia earlier, allowing people to live for several years post-diagnosis.
Despite the condensed nature of this case study, it's important to recognize that these situations would realistically unfold over the course of several years. While the narrative may feel brief, in reality, it mirrors the extended timeframe often associated with living with dementia. Now, let's proceed with the case study.
Sapphire
- “True Blue”
- Healthy brain
- Typical/normal aging
We are going to start with the Sapphire State, characterized by what Teepa refers to as "true blue" or typical aging. At this stage, individuals may experience slightly slower movements, reduced thinking and processing speed, and perhaps mild challenges in word-finding or remembering names. Despite these subtle changes, the Sapphire State signifies a phase of healthy brain function.
Sapphire Case Study
- Robert Smith
- Preferred name: Mr. Bob
- Living at home with his wife, driving, and completing all ADLs and IADLs without assistance or use of AD/AE
- Enjoyed gardening, playing dominoes, reading the paper, and occasionally going out for dinner and dancing with his wife and friends
- Has 2 grown sons and 5 grandchildren
Now, let's apply the Sapphire State to our case study. Meet Mr. Bob, formally known as Robert Smith. Currently residing at home with his wife, Mr. Bob leads an independent life. He manages daily activities and instrumental activities of daily living (ADLs and IADLs) without requiring assistance or adaptive equipment. His interests include gardening, playing dominoes, reading the paper, and the occasional outing for dinner and dancing with his wife and friends. With two grown sons and five grandchildren, Mr. Bob cherishes a full and engaged family life during this initial stage.
- 83 y/o male
- He fell while gardening in his backyard, sustaining a hip fracture that required a THR
- Noted mild cognitive deficits that he was able to compensate for by using memory aids
- Calendar
- To-do lists
- Reminders on his phone
- Admitted to SNF for rehab with the goal of returning home with his wife
At the age of 83, a pivotal event occurred in Mr. Bob's life. While tending to his garden, he experienced a fall, resulting in a hip fracture necessitating a total hip replacement. During this time, he exhibited mild cognitive deficits, but Mr. Bob effectively compensated by employing memory aids such as calendars, to-do lists, and reminders on his phone - embracing technology to support his cognitive functions.
Post-surgery, Mr. Bob transitioned to a skilled nursing facility for rehabilitation. The primary objective was to facilitate his recovery, aiming for a successful return home to be with his wife. This marked a significant point in his journey through the GEM States, introducing new challenges and adjustments.
Change in Plans
- Mr. Bob is not progressing as expected in therapy
- His wife is concerned about caring for him at home
- The decision is made that he will stay at the SNF for LTC for now
Despite initial plans for a swift return home, unforeseen challenges emerged in Mr. Bob's rehabilitation journey.
Unexpectedly, Mr. Bob's progress in therapy did not align with expectations, causing concern for his wife regarding the feasibility of providing care at home. Given his substantial size—standing at a little over six feet and weighing 200 pounds - there were legitimate worries about the physical demands of assisting him. Consequently, a decision was made to extend his stay at the skilled nursing facility for long-term care. While this adjustment deviated from the original plan, the hope persisted that the window for a potential return home would remain open in the future.
Diamond
- Clear and sharp
- Habit and routine
- Can cut and shine
Now, let's shift our focus to the next stage in the GEM States—Diamond. In the Diamond State, individuals are in the early stages of dementia, retaining clarity and sharpness. They excel in habit and routine, shining particularly well in familiar environments. However, introducing stress, and anger, or placing them in unfamiliar settings can lead to significant challenges, akin to a sharp cut.
Those in the Diamond State may struggle to comprehend others' perspectives, often attributing their mistakes to external factors. This stage is characterized by a strong preference for the familiar and a notable self-focus.
Diamond Case Study
- Noted progressing cognitive changes
- Increased difficulty compensating for changes
- Resists using the RW as PT recommended
- Diagnosed with early stages of dementia
- Mr. Bob insists he is ready to go home
- His wife is concerned about being able to care for him as her health is starting to decline
- Starting to try to leave the SNF and go home
In Mr. Bob's case, we're observing progressive cognitive changes as he transitions into the Diamond State. While he previously effectively compensated for cognitive challenges using tools like calendars and reminders on his phone, these strategies are becoming less effective. Notably, he is resisting the use of a rolling walker recommended by physical therapy. His diagnosis now includes the early stages of dementia, but Mr. Bob vehemently insists on returning home, expressing frustration with his current situation in the skilled nursing facility.
However, his wife, recognizing her own declining health and the challenges associated with caring for him, harbors concerns about bringing him home. Despite outwardly denying any cognitive difficulties, signs like withdrawal from usual activities hint at a potential awareness of cognitive changes. Mr. Bob appears to be navigating through the stages of grief, experiencing emotions such as depression, anger, and anxiety.
The situation becomes more complex as Mr. Bob's denial turns into anger, directed at both his wife and the facility staff, whom he perceives as keeping him "locked up" at the skilled nursing facility. This frustration escalates to the point where he attempts to leave the facility, a behavior commonly labeled as exit-seeking. The anger begins to manifest as aggression, posing challenges for both Mr. Bob and the facility staff in managing his desire to return home.
OT's Role
- Root cause analysis of efforts to elope
- When? Where? Why? How?
- Mr. Bob tended to wander and try to leave during periods of “downtime” (i.e., shift change, immediately before/after meals)
- Offer meaningful engagement opportunities specifically during periods of “downtime”
- Reading the newspaper
- Playing dominoes
- Music/dancing
In addressing Mr. Bob's exit-seeking behavior, our role as occupational therapists involves conducting a root cause analysis. While nursing can perform this analysis, our unique contribution lies in identifying meaningful engagement opportunities to redirect his focus. This involves understanding when, where, why, and how he attempts to leave and strategically incorporating activities during those times to reduce the desire to elope.
Upon deep diving into the root cause analysis, it becomes apparent that Mr. Bob tends to wander during periods of downtime, such as shift changes or meal times when staff is occupied with other residents. Leveraging our OT skills, we aim to offer meaningful engagement opportunities tailored to Mr. Bob's interests. Before his hospitalization, he enjoyed reading the newspaper, playing dominoes, and engaging in music and dancing.
For reading the newspaper, it's essential to provide articles that align with his usual interests, whether in the business or sports sections. Similarly, for dominoes, we need to identify someone at the facility willing to play, ensuring the game aligns with his preferred variation. Lastly, with music and dancing, it's crucial to incorporate the genres he enjoys, perhaps utilizing headphones and an iPod or setting up music in his room.
It's important to note that our role extends beyond merely delivering activities; true occupational therapy involves identifying what is meaningful to Mr. Bob and training others to facilitate his engagement. Our skill lies in tailoring activities to his preferences, setting up environments to support participation, and ensuring that the engagement is truly meaningful for him.
- Engagement in occupation (i.e., gardening group)
- Look at current abilities and need for adaptation
- Standing vs. sitting
- Need for visual, verbal, or tactile cues
- Ensure purpose
- Help another resident
- Provide produce for a shelter or food pantry
- Goals focused on balance, AE use, functional mobility, training others, etc.
- Additional benefits of social engagement, time outside, reconnection with prior leisure activity
In addition to addressing exit-seeking behaviors, exploring other engagement opportunities is crucial for Mr. Bob's overall well-being. Recognizing his passion for gardening, the skilled nursing facility offers a gardening group with raised flower beds on the patio, providing an excellent avenue for involvement.
To tailor his participation, we assess Mr. Bob's current abilities and the potential need for adaptation. Can he engage in gardening while standing or sitting? What cues work best for him, respecting the delicate balance of the Diamond State where independence is valued? Since Mr. Bob may resist explicit instructions, we approach him with the idea that his expertise is needed. For instance, we might say, "Mr. Bob, we're having some challenges with a particular plant. Can you lend your expertise?"
Our occupational therapy goals focus on aspects such as balance, adaptive equipment use, and functional mobility. Simultaneously, we're training others and ensuring that Mr. Bob's engagement in the gardening group aligns with his abilities. While it's not within our scope to continually do the activity with him, we play a pivotal role in setting him up for success, allowing him to enjoy social engagement, spend time outdoors, and reconnect with a cherished leisure activity. This demonstrates the skilled aspect of occupational therapy in assessing abilities, determining adaptations, and facilitating meaningful engagement.
- Reinforcement of RW use, safety
- Visual cues
- Use of “white coat” authority
- Dancing activities to improve dynamic standing balance
- Resists care
- Obtain permission
- Provide support only when needed for safety and ensure CNAs and nurses do the same
- Establish a routine
Addressing Mr. Bob's resistance to using the rolling walker, our role as occupational therapists involves reinforcing the recommendations from physical therapy (PT) during our sessions. Given his inclination to resist explicit instructions, visual cues become crucial. Recognizing the influence of authority figures, we may leverage "white-coat authority" by referencing what the doctor, administrator, or PT has advised, emphasizing the importance of the walker for safety.
To work on dynamic standing balance without directly addressing any perceived issues, we can incorporate activities like dancing, an enjoyable pastime for Mr. Bob. This approach allows us to seamlessly integrate balance exercises into activities he values, such as dancing or even gardening while standing.
When dealing with resistance to care—a common occurrence in the Diamond State—we must exercise caution. We provide support only when necessary for safety, ensuring that the nursing staff is similarly trained. Seeking Mr. Bob's permission and employing a positive physical approach, such as hand-under-hand techniques, is vital. This approach involves entering his space with respect and obtaining consent. It's crucial to proceed slowly, respecting his autonomy, as continuous offers of help may lead to frustration, anger, or aggression.
An effective strategy is to suggest parallel activities, asking Mr. Bob to perform a task while we do something alongside him. This approach allows him to feel in control and gives the appearance of self-sufficiency, addressing the permission aspect and minimizing potential resistance.
Emerald
- “On the go with purpose”
- Flawed
- Miss details
Moving forward to the Emerald State, Teepa describes this stage as "on the go with purpose." Individuals in the Emerald State are characterized by an active and purposeful demeanor. However, it's important to note that emeralds, like this stage, are naturally flawed. In the Emerald State, individuals may overlook many details and exhibit decreased insight into their declining abilities. The challenges associated with this stage bring about a need for understanding and support, acknowledging the flaws while maintaining a focus on purposeful engagement.
Emerald Case Study
- Mr. Bob’s dementia has progressed, and he is now in a predominantly Emerald state
- He continues to be interested in the garden as it has become part of his routine
- Staff members have noticed that he is increasingly unsafe outside, bumping into people and objects, spilling or dropping things, and damaging plants
- Staff and other residents have asked that he not be allowed to participate in gardening
As we transition to the Emerald State, Mr. Bob's experience differs from the Diamond State, where he often asserted his independence with statements like, "I'm fine, I can do this, I don't need help." In the Emerald State, he exhibits a decreased awareness of his declining abilities, requiring guidance for the next steps. This stage is characterized by missing approximately one out of every four words spoken by others. As therapists, recognizing the importance of using fewer words becomes crucial during interactions, allowing for improved communication.
In Mr. Bob's case, his dementia has predominantly progressed into the Emerald State. It's important to note the fluidity of these GEM States, as individuals can shift between them based on internal and external factors. Despite the potential for occasional shining moments akin to the Diamond State or a shift towards the Amber State under stress, Mr. Bob spends most of his time in the Emerald State.
Maintaining his interest in the garden, which has become an integral part of his routine, Mr. Bob encounters challenges as staff members observe him becoming unsafe outdoors. Bumping into people and objects, spilling and dropping things, and damaging plants have led to concerns from both residents and staff. Consequently, there are calls to restrict his participation in gardening, a loss that deeply affects Mr. Bob, and his wife, and, as occupational therapists, tugs at our empathy as we witness a piece of who he was potentially slipping away.
OT's Role
- Gardening is becoming more difficult, but not impossible
- OT can assess what supports are needed to help Mr. Bob be more successful during gardening activities
- What portions of the task can he still perform?
- Educate team members on how to guide him to the next step
- What types of cues work for him?
- How often should he be cued?
In addressing Mr. Bob's challenges in the Emerald State, the occupational therapist plays a crucial role in creatively adapting tasks to make them more accessible. Recognizing that tasks may become more difficult but are not necessarily impossible, our focus is on assessing and identifying the supports needed for Mr. Bob to be successful during gardening activities.
Starting with a comprehensive assessment, we evaluate what he can still do, pinpoint areas of struggle, and determine the appropriate supports required. This involves progressing from gardening while standing to encouraging him to sit, providing additional support, and identifying effective cues. The skilled aspect of occupational therapy lies in the ability to assess capabilities, customize interventions, and implement strategies to enhance function and well-being.
Acknowledging the importance of Mr. Bob feeling needed and useful, we incorporate his assistance by inviting him to help with specific tasks. This approach fosters a sense of purpose and engagement. Additionally, providing shorter answers, employing gestures and demonstration, or engaging in side-by-side activities contributes to his success, considering the challenge of missing spoken words.
To accommodate cognitive processing slowing down, we allow ample time for Mr. Bob to process information. Creating pauses in communication without filling them with excessive words is essential to support his cognitive pace. As occupational therapists, our role extends beyond individual sessions; we must also train staff members to implement these strategies effectively, ensuring continuity in Mr. Bob's care.
Physical Activity and Exercise
- Exercise may be difficult unless Mr. Bob exercised regularly prior to his diagnosis of dementia
- Get creative – lifting bags of potting soil or mulch from one surface to another is purposeful and will provide strengthening and improve balance
- Studies have shown a positive effect of exercise on behavioral symptoms of dementia
Engaging individuals with dementia in exercise can present unique challenges, especially when adherence to structured routines is difficult. Traditional approaches, such as two sets of ten repetitions or sustained use of weights, may not align with the abilities or preferences of those living with dementia. However, studies have demonstrated the positive impact of exercise on behavioral symptoms in dementia, making it essential to find creative and personalized solutions.
Incorporating familiar functional tasks into an exercise routine becomes crucial. Creative approaches involve activities such as lifting bags of potting soil or mulch, engaging in purposeful dancing, or other tasks that mimic exercise without the individual perceiving it as a repetitive workout. This approach not only maintains their interest but also contributes to improving strength, coordination, range of motion, and balance, even when adherence to conventional exercises may be challenging. By intertwining purposeful activities with exercise, we can provide valuable benefits to individuals living with dementia while respecting their unique preferences and abilities.
Amber
- “Caught in a moment of time”
- Curious > Cautious
- Sensory focused
In the Amber State, individuals are caught in a moment of time, akin to being frozen in a state of curiosity. They are more curious than cautious, displaying a lack of concern for safety. This stage is characterized by a heightened sensory focus, where individuals seek out what they like and actively avoid stimuli they find unpleasant. They are adept at copying tones, words, and volumes, yet their understanding of the words may be limited. While they can mimic phrases, grasping the overall meaning may elude them, leading to potential misinterpretation.
In the Amber State, individuals may also experience object confusion, mistaking one item for another. For instance, they might confuse a toothbrush with a comb or denture cream with arthritis analgesic gel. Such confusion can have practical implications, necessitating caution in interactions and interventions to ensure their well-being.
Amber Case Study
- Mr. Bob primarily uses a wheelchair but can take a few steps for transfers if he has support
- He still enjoys going out to the garden and occasionally will help water the plants
- Mr. Bob continues to come to the dining room for meals, but recently stopped feeding himself
- Nursing referred him to OT for a decline in self-feeding
As Mr. Bob transitions into the Amber State, there are notable changes in his physical abilities and behaviors. He is now primarily using a wheelchair due to a continued decline in strength and balance, although he can manage a few steps for transfers with support. While he occasionally attempts to stand without assistance, he generally appears content to sit in the wheelchair and uses his feet to propel himself when he wishes to move.
His enjoyment of the garden persists, and he occasionally participates by helping water the plants. However, his engagement in other activities has declined. Notably, Mr. Bob has recently ceased feeding himself, signaling a shift in his level of independence and prompting the need for increased support and assistance with daily tasks, such as meals. This shift emphasizes the evolving nature of his abilities and highlights the importance of adapting care strategies to meet his changing needs in the Amber State.
OT's Role
- OT assessment shows that Mr. Bob is not positioned properly in his wheelchair, and his tray is not being set up for him
- Cushions and footrests are provided to improve upright posture and prevent sliding forward in the chair
- Provide a single bowl or small plate and one utensil to promote independence in self-feeding
- Assess performance across several days and different meals
In addressing Bob's decline in self-feeding, the occupational therapist began by assessing his positioning in the wheelchair. Notably, he had slid down to an uncomfortable position, hindering his ability to see the table and tray clearly. The solution involved improving his posture with a better cushion and footrest to prevent sliding forward.
However, even with improved positioning, Mr. Bob continued to struggle when presented with a fully set tray. The overwhelming array of items, including a plate, bowl, utensils wrapped in a napkin, and cups with plastic lids, proved too much for him to navigate. In response, the therapist simplified the task by providing a single bowl or small plate and one utensil. This reduction in choices allowed Mr. Bob to feed himself successfully. Adaptation was key, recognizing that he couldn't make choices regarding utensils and food items.
The therapist emphasized the need for ongoing assessment across different meals and days, considering variations in Mr. Bob's performance. Fluctuations in dementia symptoms, different times of day, and various meal settings all contribute to the complexity of evaluating his abilities consistently.
Moreover, the therapist considered environmental factors such as potential distractions in the Amber State, where individuals can easily be diverted by sounds or smells. Identifying strategies that promote safety and independence, and then training others to implement them, underscores the skilled nature of occupational therapy. The ultimate goal is not just to assist in the task but to understand and apply effective strategies across varying conditions, ensuring Mr. Bob can function optimally in his environment.
Ruby
- “Retains strength, not skills”
- Rhythm
- Can imitate
Entering the Ruby State, individuals maintain physical strength but experience a decline in skills. Notably, they exhibit a preference for whole-hand grasp, enabling them to hold and carry items, though releasing them becomes challenging. The Ruby State is characterized by an appreciation for rhythm, leading individuals to engage in activities such as singing, humming, swaying, clapping, and dancing. This retained skill offers opportunities to enhance interaction with others and promote functional engagement.
Another notable feature is their ability to imitate, a skill that occupational therapists can leverage to improve overall function. In the Ruby State, individuals can still engage in social chitchat, exchanging pleasantries and basic conversational phrases like "Hi, how are you?" and "I'm fine, and you?" This ability might temporarily mask their condition, potentially fooling those unfamiliar with the progression of dementia. However, as conversations move beyond the realm of traditional social chit chat, individuals in the Ruby State may struggle, revealing the limitations in their cognitive abilities.
Ruby Case Study
- Mr. Bob has been observed to no longer use utensils, even if they are placed in his hand
- He is also starting to lose his balance during transfers from his wheelchair <> bed and wheelchair <> toilet or shower chair
- Mr. Bob’s wife has expressed concern about visiting him because he does not interact with her or even seem to notice that she is there
In the Ruby State, Mr. Bob is exhibiting changes in his abilities and interactions. While he continues to eat in the dining room, a noticeable shift is observed as he no longer uses utensils, even when placed in his hand. The loss of recognition of these common objects suggests a decline in his cognitive abilities, particularly in understanding their purpose.
Furthermore, challenges in balance during transfers become apparent, especially when backing up to sit on the bed or toilet. This highlights the need for increased support and adaptation in daily activities to ensure safety and minimize the risk of falls.
Notably, Mr. Bob's wife has expressed concerns during care plan meetings, noting a decline in his interactions and awareness during her visits. Addressing these concerns is crucial not only for the well-being of Mr. Bob but also for his wife's emotional connection and engagement. Including family members in training sessions is emphasized as an essential aspect of comprehensive care. While Mr. Bob's ability to notice and respond may be diminishing, the therapeutic focus extends beyond the individual to encompass the broader support network, recognizing the importance of sustaining meaningful connections for both the person with dementia and their loved ones.
Occupational therapists play a pivotal role in training both care staff and family members, ensuring they are equipped to provide effective support, engage with the individual, and adapt to the evolving needs associated with dementia progression. This collaborative approach remains a skilled function of occupational therapy, emphasizing the holistic nature of care in addressing the complex challenges presented in the Ruby State.
OT's Role
- Finger foods – whenever possible, this can be a good alternative to foods that require a utensil once people can no longer use a utensil.
- Transfers – because backing up is difficult for Mr. Bob and places him at risk of losing his balance and falling, OT can look at other ways to get him close enough to sit (i.e., sidestep, either in a straight line or curved, to get closer to the sitting surface). When possible, bringing the chair/seat to him will help.
As individuals like Mr. Bob progress into the Ruby State, adapting to changes in their abilities becomes crucial. When it comes to eating, transitioning to finger foods can offer a dignified alternative, especially when utensils become challenging to use. Finger foods, including veggie sticks, french fries, chicken fingers, hamburgers, and hot dogs, provide an opportunity for greater independence in self-feeding. Collaboration with speech-language pathologists (SLPs) is recommended to address potential chewing or swallowing challenges, ensuring a comprehensive approach to nutritional support.
In the context of transfers, backing up becomes a significant challenge in the later stages of dementia. Mr. Bob, experiencing difficulties in this movement, may benefit from alternative approaches. Occupational therapists can explore strategies such as sidestepping, either in a straight or curved line, to facilitate closer proximity to the sitting surface. Additionally, adjustments to the environment, such as bringing the sitting surface closer to the individual, can enhance safety and ease during transfers. The hand-under-hand technique, as discussed by Laurie in the previous session, proves valuable in guiding individuals like Mr. Bob safely for sitting, emphasizing a compassionate and supportive approach in their care.
- When interacting with Mr. Bob while he is in a ruby state, it is important to keep the following tips in mind:
- Fewer words, more gestures (Show, Don’t Tell)
- Offer only 2 choices (this or that; this or something else)
- Use rhythm to your advantage (music may help)
- Give positive encouragement
- Guide him to help him get started
As individuals like Mr. Bob transition into the Ruby State, effective communication and interaction become paramount. Given the increased loss of words, relying on fewer words and incorporating more gestures proves beneficial. The principle of "show, don't tell" becomes particularly relevant, involving pointing, demonstrating, and guiding through non-verbal cues. When offering choices, limiting options to two provides a manageable decision-making process. For instance, when assisting with upper body dressing, presenting options like, "Do you want the blue shirt or the red shirt?" allows participation while maintaining appropriateness for the weather.
Leveraging rhythm, such as incorporating music or creating a rhythmic vocal pattern, can aid in facilitating transfers. If Mr. Bob has a history of enjoying dance, simple dance steps synchronized with rhythm may serve as a helpful motivator. Providing positive encouragement and guidance during the initiation of tasks becomes crucial, recognizing that once started, individuals in the Ruby State may exhibit increased participation. Identifying effective cues and techniques tailored to Mr. Bob's preferences and training staff accordingly requires skilled intervention in occupational therapy.
Pearl
- “Hidden in a shell”
- Reflexive
- Generally dependent
As individuals progress to the Pearl State, they become more withdrawn, often appearing as if they are hidden in a shell. Basic living tasks become increasingly challenging, leading to a high level of dependence on others for all activities. People in Pearl State may adopt a curled-up or fetal position and are typically wheelchair or bed-bound. Despite these challenges, moments of emergence may still occur, emphasizing the importance of patience and slowing down when attempting to connect with them.
Individuals in the Pearl State are governed by reflexes, and their ability to communicate verbally or through traditional means diminishes significantly. They may display signs of distress, such as facial grimacing, calling out, or crying, as a way to express unmet needs. Understanding and addressing these non-verbal cues becomes crucial in providing necessary support and ensuring the individual's comfort. While they may be largely dependent on others, the goal is to maintain a sense of dignity and alleviate any discomfort or distress they may be experiencing.
Pearl Case Study
- Palliative care has been initiated, and Mr. Bob’s family is considering hospice
- Pain is noted with turning/repositioning – Mr. Bob will grimace and call out either “Ow!” or “Help!”
- CNAs are having difficulty with pericare, oral care, and bathing
In Mr. Bob's case, palliative care has been initiated as the family acknowledges the progression toward the end of life, contemplating hospice without having commenced it as of now. The concern brought to the attention of the OTP involves pain experienced during turning and repositioning. Mr. Bob exhibits signs of discomfort, expressing this through vocalizations such as "Ow" or calling out for help. Additionally, Certified Nursing Assistants (CNAs) encounter challenges in providing pericare, oral care, and bathing, specifically in areas such as his hands and the areas beneath his arms, which are notably contracted and challenging to access.
OT's Role
- Staff/caregiver training to slow down and be gentle to reduce the risk of pain
- Use single words and wait for a facial reaction or response
- Tell him what you are going to do before you do it, but in simple terms
- Positioning – educate staff on positioning for comfort and to reduce pressure on bony protuberances with repositioning to alleviate pressure
In the current phase of palliative care for Mr. Bob, the role of the OT may not involve transitioning him from dependence to participation in self-care. However, the OT can play a vital role in staff and caregiver training to ensure that care tasks are carried out with minimal discomfort and reduced risk of pain for Mr. Bob. This involves advising on gentle and slow approaches, using single words and clear communication, and giving Mr. Bob time to process information before proceeding with care tasks.
Additionally, the OT can provide education on optimal positioning for comfort and pressure reduction on bony prominences, as well as strategies for repositioning to alleviate pressure. The goal is to enable the completion of care tasks, such as bathing, pericare, and oral care, without causing undue pain or resistance from Mr. Bob. While the apparent outcome may not involve increased independence, the prevention of pain and discomfort is crucial in maintaining Mr. Bob's quality of life during this stage of care. The OT's expertise lies in identifying effective strategies and training caregivers to implement them, contributing significantly to Mr. Bob's well-being.
Environmental Modifications
- Music
- Familiar music – what he used to listen to
- Calming music – slow, instrumental
- Can help reduce agitation and provide an avenue for interaction
- Aromatherapy
- Lavender, lemon, orange, rosemary
- Can reduce agitation, improve sleep quality, and improve mood
- Diffuse or spray
In the Pearl State, environmental modifications remain crucial to enhance the quality of care and interaction for individuals like Mr. Bob. Music, particularly familiar tunes, can be a powerful tool to reduce agitation and foster interaction. Even when verbal communication becomes challenging, individuals in the Pearl State may still respond positively to music, exhibiting reactions like eye opening or singing.
Calming music, characterized by slower tempos and instrumental compositions, can be especially effective in creating a serene environment and facilitating care tasks without causing agitation or pain. Additionally, aromatherapy emerges as a valuable technique, with scents like lavender, lemon, orange, and rosemary having proven benefits in reducing agitation, improving sleep quality, and enhancing mood. Collaborating with family members to identify scents that are comforting or familiar to Mr. Bob allows for a personalized approach to aromatherapy. By incorporating these environmental modifications, the OT can contribute to minimizing distress and optimizing the care experience for individuals in the Pearl State.
Caregiver Training
- Renewed focus based on new CMS regulations
- Caregiver training CPT codes
- GUIDE
- Occupational Therapists can serve a unique role when providing education and training for those who are caring for someone who is living with dementia.
- CNAs
- Family members
- Other team members (i.e., activities, housekeeping)
Throughout this presentation, there has been an emphasis on caregiver training, and this is particularly relevant due to recent developments from the Centers for Medicare and Medicaid Services (CMS). CMS has introduced new CPT codes allowing the billing of caregiver training without the patient being present. While the specifics of billing aren't delved into in this course, it's essential to be aware of these changes, highlighting the significance of caregiver training in the eyes of CMS. The newly introduced GUIDE program is another noteworthy initiative by CMS, focusing on dementia care in the community.
Although this program doesn't directly impact skilled nursing facilities (SNF), it underscores the broader recognition of the need for training and education for those caring for individuals with dementia. This program is a paid component, aligning with the acknowledgment of the importance of caregiver education. Notably, CMS sought the expertise of the American Occupational Therapy Association (AOTA) in developing the GUIDE program, illustrating the recognized role of occupational therapists in supporting individuals with dementia and their caregivers. As occupational therapists, providing education and training to caregivers, including CNAs, family members, and other team members, is crucial for fostering effective care and interactions in various care settings.
Person-Centered Care
- Words matter
- A person living with dementia, not a dementia patient
- Someone who needs help to eat, not “a feeder”
- Allow them to follow their usual routines
- Morning person vs. night person
- Coffee vs. tea
- Know the person’s history and what is important to them
- i.e., enjoying gardening and dancing
- Know veteran status and be mindful of loud noises
Person-centered care remains crucial, especially when working with individuals living with dementia. The language we use is vital, emphasizing personhood over the condition. Referring to them as a person living with dementia rather than a "dementia patient" is a prime example. Activities and care should be tailored to their individual preferences and routines. Recognizing whether someone is a morning or night person, their beverage preferences (like coffee or tea), and understanding their personal history contribute to a more personalized and effective approach.
In Mr. Bob's case, incorporating his interests, such as gardening, dancing, and reading the paper, into treatments and purposeful activities enhances his engagement. Additionally, being aware of a person's veteran status or previous occupation can offer valuable insights into potential triggers or preferences. This person-centered approach ensures that care is respectful and meaningful, and considers the unique identity and experiences of each individual living with dementia.
Key Takeaways
- OTs can play a significant role in the quality of life for those who are living with dementia
- Skilled OT services can be appropriate at each stage of dementia
- Some episodes of OT may be longer and with a higher frequency (i.e., rehabilitation services, establishing new routines)
- Some episodes of OT may be shorter and with a lower frequency (i.e., environmental adaptations, caregiver training)
Occupational Therapists (OTs) play a significant role in improving the quality of life for individuals at different stages of dementia. The frequency and duration of OT sessions can vary, with higher intensity in the early stages and a gradual tapering down as the focus shifts to environmental adaptations and caregiver training. Functional maintenance plans are crucial, involving the determination of effective support and adaptations. Training caregivers and staff is essential, with periodic reassessment and adjustments as the patient's condition progresses. Consider a tapering approach for session frequency, starting with higher intensity and gradually reducing it to ensure a smooth transition and sustained support from staff. Adaptability is key, and OT interventions must be flexible to accommodate the evolving needs of individuals as dementia progresses. By incorporating these principles, OTs can make a lasting impact on the lives of individuals with dementia, promoting their well-being and maintaining functional abilities to the best extent possible.
Questions
Why is the diamond stage referred to as clear and sharp despite cognitive decline?
The term "clear and sharp" for the diamond stage reflects the ability of individuals in the early stages of dementia to compensate for and hide their cognitive decline. They may engage in conversations and appear clear, making it challenging for others to recognize the onset of dementia.
Are there standardized programs for educating caregivers in dementia care methods?
Yes, Teepa Snow offers various training programs on her website (www.teepasnow.com), including both free and paid options. She covers a range of topics related to dementia care, providing valuable resources for caregivers.
How can a patient on a puree diet maintain independence during meals?
Collaborating with an SLP is crucial to understanding why a patient is on a puree diet. By addressing underlying issues, such as chewing difficulties, OTs can work with SLPs to create alternatives, like using moist white bread for finger foods.
Is there a relationship between education level and cognitive decline?
While it may appear that individuals with lower education levels experience more significant cognitive decline, it's essential to focus on cognitive processes and communication changes rather than intelligence. Understanding a person's baseline functioning is crucial for accurate assessments.
What billing codes can be used for caregiver training under Medicare Part A?
For caregiver training, billing codes depend on the specific training provided. For example, training on self-feeding might be billed under ADLs, while training on safe transfers could be billed under therapeutic activities.
How do you introduce dementia care practices to SNF staff, especially when short-staffed?
Teepa Snow's short YouTube videos can serve as a quick introduction for staff during meetings or training sessions. Gradually introducing new concepts and emphasizing how these approaches can make tasks easier may help gain buy-in.
Who determines the GEM stage of a client, rehab staff, or the entire team?
While therapists often assess GEM stages, input from the entire team is valuable. Collaboration allows for a comprehensive understanding of the client's abilities and challenges.
How do you get staff buy-in to slow down when short-staffed and overwhelmed?
Demonstrating how slowing down can make tasks easier and more efficient, reducing the need for additional staff, is key. Highlighting the positive impact on patient interaction and showing time comparisons can encourage buy-in.
How do you address caregiver training carryover challenges, especially in memory care facilities?
Partnering with caregivers, providing live demonstrations, and using a tapering down approach in frequency can help address carryover challenges. This ensures ongoing support and encourages caregivers to witness the effectiveness of the techniques.
References
Allen, J., Caiquo, J. Sumner, M., Tawil, A. S., & Mele, J. (2021). Environmental modifications for dementia care. Retrieved from Stanbridge University repository website: https://repository.stanbridge.edu/95/1/MSOT010.10.pdf
Demurtas, J., Schoene, D., Torbahn, G., Marengoni, A., Grande, G., Zou, L., Petrovic, M., Maggi, S., Cesari, M., Lamb, S., Soysal, P., Kemmler, W., Sieber, C., Mueller, C., Shenkin, S. D., Schwingshackl, L., Smith, L., Veronese, N., & European Society of Geriatric Medicine Special Interest Group in Systematic Reviews and Meta-Analyses, Frailty, Sarcopenia, and Dementia (2020). Physical activity and exercise in mild cognitive impairment and dementia: An umbrella review of intervention and observational studies. Journal of the American Medical Directors Association, 21(10), 1415–1422.e6. https://doi.org/10.1016/j.jamda.2020.08.031
Galiana, J., & Haseltine, W. A. (2019). Aging well: Solutions to the most pressing global challenges of aging. Palgrave Macmillan.
Citation
Briggs, E.(2023). Skilled nursing facility interventions: Applying GEMS states, a case study utilizing positive approach to care. OccupationalTherapy.com, Article 5658. Available at www.occupationaltherapy.com