REHABILITATION FOR PERSONS WITH DEMENTIA

The goals of rehabilitation for persons with dementia are to help maintain or improve higher cognitive function and engagement in daily activities to the extent possible as the disease progresses, devise strategies to compensate for declining function, and provide caregivers with the education and skills they need to create a supportive environment and reduce disability.

Occupational therapy, physical therapy, and speech-language pathology services can be of great benefit to patients with dementia as well as to their family members and other caregivers. (See also “Caring for the Person with Alzheimer’s Disease” below.)

Occupational Therapy

Occupational therapists typically focus on five areas of human occupation when working with patients with dementia. These areas include:

• Activities of daily living (i.e., eating, hygiene, dressing, mobility, toileting)
• Instrumental activities of daily living (i.e., care of others, household management, safety, home maintenance, transportation)
• Rest and sleep
• Leisure
• Social participation

The goals of the occupational therapist are to maximize the patient’s involvement in both ADLs and IADLs, promote safety, and enhance a patient’s quality of life. OT practitioners focus on identifying the patient’s remaining abilities rather than on their deficits and looking for ways to maintain and prolong the person’s independence.

EVALUATION PROCESS

Occupational therapists evaluate patients with dementia to determine their strengths, impairments, and performance areas that need intervention and to help patients retain existing function for as long as possible. When working with dementia patients, occupational therapists use a family-centered model that includes family caregivers in all aspects of the process.

The process begins with an occupational profile, an analysis of occupation, and the use of standardized and nonstandardized assessment tools to evaluate specific domains, such as those described in the table below. During the evaluation process, the occupational therapist also identifies caregiver concerns about occupational performance and the handling of difficult behaviors.

OCCUPATIONAL THERAPY ASSESSMENT TOOLS

Domain	Tool
(AbilityLab, 2021, 2020a, 2020b, 2019; AOTA, 2021b; Coyne, 2021; Encyclopedia of Mental Disorders, 2021; Liebzeit et al., 2018; MD+CALC, 2021; Occupational Therapy Insights, 2019; O’Sullivan et al., 2019; Pashmadarfard & Azad, 2020; Physiopedia, 2021b; Pitt, 2021; Struckmeyer et al., 2020; U of I, 2020; Westergen, 2019)
Activities of daily living	Functional Independence Measure (FIM): assesses the person’s physical and cognitive disability and focuses on the burden of care Kohlman Evaluation of Living Skills (KELS): assesses a patient’s ability to perform both ADLs and IADLs Barthel Index: assesses basic ADLs Katz Index of Independence in ADLs: assesses basic ADLs
Instrumental activities of daily living	Routine Task Inventory: assesses through observation the degree to which a person’s cognitive restriction interferes with everyday task performance Lawton Scale for IADLs: assesses independent living skills and is useful in determining functional baseline and improvement or deterioration over time Performance Assessment for Self-Care Skills: assesses functional mobility, basic ADLs, IADLs, and tasks with cognitive emphasis Texas Functional Living Scale (TFLS): assesses IADLs, especially in older adults with Alzheimer’s disease
Leisure	Interest Checklist: elicits information about the person’s past and present leisure activities and interests and the degree of attraction toward them
Motor skills	Berg Balance Scale (BBS) and Timed-Up-and-Go (TUG): assess balance Tinetti Falls Efficacy Scale (FES): assesses both balance and gait
Cognitive function skills	Allen Cognitive Level Screen: performs a quick estimate of an individual’s learning and problem-solving abilities during performance of three visual motor tasks of increasing complexity Cognistat: assesses neurocognitive functioning in the general domains of consciousness, orientation, and simple attention, and in the five major domains of language, constructional ability, memory, calculation skills, and executive skills
Physical environment	Home Safety Checklist (HSC): measures overall home safety Home Environmental Assessment Protocol-Revised (HEAP-R): evaluates the environment as the caregiver and person with dementia work together to adapt to progressive cognitive decline
Nutrition	Minimal-Eating Observation Form-Version II: an interactive observational tool in which the therapist notes the presence or absence of aberrant eating, feeding, or swallowing behaviors McGill Ingestion Skills Assessment (MISA): assesses a person’s ability to safely and independently consume a variety of food and liquid textures
Accompanying conditions	Assessment and referral for vision or hearing loss

INTERVENTIONS

As part of the interdisciplinary team, occupational therapists provide evidence-based interventions throughout the continuum of care and across the entire health spectrum for Alzheimer’s patients and families, setting up a program to meet the goals of safety, independence, utilization of retained abilities, and improved quality of life for the patient as well as family and caregivers.

During Early Stages

Interventions in the early stages of Alzheimer’s disease may focus on compensating for a loss of cognitive abilities and recognizing remaining abilities rather than remediating deficit areas. During this stage of the illness occupational therapists determine the most meaningful activities for the patient and suggest memory aids, such as calendars, journals, medication reminders, and daily routine schedules. Combining these with caregiver education improves independence and reduces caregiver distress.

During Middle Stages

During the middle stages of the illness when there is a greater decline in memory and high-level cognition, occupational therapists:

• Use cues and prompting to assist with basic self-care tasks
• Offer ADL retraining along with balance and functional mobility retraining
• Encourage caregivers to allow the person to continue their routines to help prevent further loss of basic self-care skills
• Include increased verbal or visual cues, demonstration, physical guidance, partial physical assistance, and problem solving when providing ADL retraining
• Repeat ADL retraining using the same activity, same sequence, same time, and same place to help increase retention
• Give one-step, simple directions to avoid frustration

During Later Stages

During the later stages of dementia when the person becomes dependent in all or most self-care activities, occupational therapists focus on adapting the environment, instructing caregivers to promote conditioned occupational performance, and teaching ways to minimize any unwanted behaviors or complicating conditions:

• Educate caregivers on safe transfers, contracture management through home exercise programs, and proper positioning to avoid skin breakdown and increase comfort
• Teach ways to minimize any unwanted behaviors or complicating conditions
• Provide enjoyable sensory stimulation
• Refer caregivers to on-line or in-person support groups
• Provide education to family members and teach ways to reduce stress
  (AOTA, 2021; Stromsdorfer, 2020)

INTERVENTION TECHNIQUES

Listed below are several evidence-based techniques occupational therapists use when working with persons with dementia.

Teepa Snow’s Positive Approach to Care (PAC) is an educational program that helps family caregivers and professionals better understand the changes in the brain and how it feels to be living with dementia. PAC provides practical advice on ways to connect and interact with people who have dementia and focusses on doing things with, rather than to the person. PAC encourages and prepares caregivers to:

• Respond rather than react to a person with dementia changes and abilities in a way that is proactive
• Appreciate that with practice, common reactions to the person with dementia can become thoughtful responses that improve everyone’s quality of life
• Recognize that the person with dementia is doing the best they can when faced with challenging situations
• Change their approach, behavior, and expectations for improved outcomes
• Modify the physical and sensory environment (lighting, sound, activity) to promote function and satisfaction
  (Alzheimer Society CA, 2021)

Occupational therapists can help meet caregivers’ needs using Skill2Care, an intervention designed to reduce behavioral symptoms through an environmental modification approach. Strategies are tailored to the unique needs and environments of the person with dementia as well as the caregiver. Skill2Care involves occupational therapists training caregivers to reduce confusion and increase safety for the patient with dementia by making changes in the living space, teaching communication skills, simplifying tasks for the patient, and engaging the patient in meaningful activities. Outcomes include:

• Improved caregiver skills and well-being
• Reduced challenging behaviors
• Slowed decline in daily functioning
  (Herge et al., 2020)

The validation method emphasizes listening to those with dementia in a way that shows empathy and respect so that the person feels valued, not judged. The role of the caregiver is to offer the person a means for verbal or nonverbal expression and advocates that, rather than trying to bring the person with dementia back into our reality, it is more positive to enter their reality, resulting in reduced anxiety and restored dignity (Wegerer, 2019).

Reality orientation is an approach used to help the person with dementia engage in and connect with their surroundings to decrease their confusion; increase awareness of time, place, and self; and improve their overall cognitive, behavioral, and social functioning by frequently referencing the time of day, date, season of year, location, and current surroundings and events in conversations with the person. Clocks, calendars, family photographs, and the like are often used to facilitate this process (Belser-Erlich & Bowers, 2019).

Reminiscence is an approach that uses all the senses to help a person with dementia recall and talk about their life story. This approach has been shown to improve mood, well-being, and some mental abilities such as memory. It involves talking about things from the past using prompts such as photos, familiar objects, or music (APA, 2020).

Tailored Activity Program (TAP) is an occupational therapy intervention shown to reduce behavioral symptoms and to ease caregiver burden. It is a family-centric program providing people with dementia activities tailored to their abilities and interests. It trains formal and informal caregivers in use of activities as part of daily care routines. It has been shown to improve quality of life, reduce behavioral symptoms and caregiver burden, and improve caregiver sense of efficacy (Johns Hopkins, 2021b).

Environmental-based methods pertain to the arrangement of a space and the objects within it as well as sensory elements to address a dementia patient’s behaviors and perceptions. These may include, but are not limited to:

• Type of lighting
• Labeling of rooms
• Nature of auditory stimuli
• Purposely or functionally designed rooms
• Multisensory interventions
• Noise regulation

Interventions employed in the home environment include maintenance of familiarity and minor home adaptations as needed (Fiser, 2019).

Physical Therapy

While not well known in the recent past, a growing body of evidence indicates that medical providers may be able to help delay or minimize patients’ symptoms of dementia through prescribed physical therapy and exercise. A recent study has shown that one month of low-frequency, short-duration, practical physical therapy that addresses motor impairment and function was associated with decreases in gait, balance, and cognitive impairment among individuals with Alzheimer’s.

The physical therapist develops a treatment program, including therapeutic exercises specifically targeted to individual patient needs, to help maximize and maintain the person’s current functional mobility capabilities as well as to reduce the physical burden on caregivers, where feasible.

Primary goals of physical therapy for patients with Alzheimer’s include:

• Optimizing functional mobility (including bed mobility, muscle strength, transfers, static and dynamic balance, coordination, endurance, and gait)
• Minimizing risk of falls and fall-related injuries
• Assessing and making recommendations related to environmental safety (in the home and/or care facility)
• Educating patients and family on the importance of physical activity as a neuroprotector of further cognitive decline
• Educating caregivers on how to safely assist patients with gross motor tasks, transfers, and other physical aspects of hands-on caregiving

A person does not need to remember having engaged in an exercise program to reap the benefits of it—just to participate in it. By slowing down cognitive decline and helping to maintain the person’s current abilities, physical therapy can improve quality of life and performance of activities of daily living (Physiopedia, 2021a; Longhurst et al., 2020).

ASSESSMENT TOOLS

Timed Up and Go (TUG) Test is used to determine fall risk and to measure the progress of balance, sit-to-stand, and walking. It is designed for people with impairments including Alzheimer’s disease. This test requires a chair with an armrest, a stopwatch, and a tape measure to mark off 3 meters (approximately 10 feet). The patient is seated in the chair. The stopwatch is started following the therapist’s command to the patient to stand up and walk the measured distance, turn around, walk back to the chair, and sit down. The stopwatch is stopped when the patient is seated. Time to complete the task is averaged over two trials; if a patient takes 14 seconds or longer, they are classified as high risk for falling.

Tandem Stance Test assesses the individual’s balance. The patient is asked to place one foot directly in front of the other, touching heel to toe. A chair can be used as needed to attain this position. Holding this position tests lateral postural stability by narrowing the base of support. The length of time the person is asked to hold this position is commonly 10–30 seconds.

Portable gait testing mat is a gait analysis system that analyzes a patient’s ambulatory biomechanics. It measures gait for both time (temporal) and space (spatial) through pressure sensors in the mat. The patient is asked to walk on the mat walkway, and software converts the sensor data into foot placement patterns and overall gait patterns. The mat provides valid and reliable walking measurements such as footfall patterns, step length, cadence, and speed, and can measure changes in walking or gait patterns through replication of real-life scenarios.

Global Deterioration Scale (GDS)/Reisberg Scale is a commonly used scale that divides cognitive decline into seven stages to better understand how well a person thinks (cognitive decline) and functions (physical abilities). This test is most relevant for persons with Alzheimer’s disease since some other forms of dementia, such as frontotemporal dementia, do not always include memory loss.

Pain Assessment in Advanced Dementia (PAINAD) is a reliable assessment tool used with patients who have advanced dementia and are judged potentially to be in pain. The scale requires close and attentive observation of the patient’s breathing, vocalizations, facial expressions, and body language. Each is graded from 0 to 2, with 0 being normal, 1 being abnormal, and 2 being extremely abnormal. A score of 1–3 is interpreted as mild pain, 4–6 as moderate pain, and 7–10 severe pain.

Pain Assessment Checklist for Seniors with Limited Ability to Communication (PACSLAC) is a more intensive observational pain tool with five subscales: facial expression, activity and body movement, social personality and mood, and “other” (such as changes in eating and sleeping behaviors).

Functional Assessment Staging Tool (FAST) describes seven progressive stages of Alzheimer’s disease. It is a cognitive staging scale that can assist in identifying lost and preserved cognitive function. Findings are used to better identify interventions to enhance quality of life and reduce care burden and the costs associated with progressive cognitive impairment. The tool is recommended for use on initial examination and whenever assessing changes in cognitive function and dysfunction. FAST is determined through interview or report from an informant and/or by observation of patient performance (Natavio et al., 2020; Dementia Care Central, 2020a).

DEVELOPING A PLAN OF CARE

Physical therapy for patients with dementia focuses on optimizing and/or preserving balance, muscle strength, and mobility; preventing falls; and providing pain management and maximized safety in the home or facility setting. Physical therapists consider both patient and caregiver needs when developing a treatment plan, which can include behavioral, cognitive, mental, physical, and functional domains.

The plan of care should enhance retention of the patient’s remaining capabilities and appeal to the patient’s individual abilities and interests. Incorporating familiar objects or actions into the physical therapy regimen for patients with Alzheimer’s disease and other dementias may prove helpful. Finding out what motivates the individual patient and incorporating favorite pastimes into the therapy plan allows for emotional development and increased feelings of comfort.

Therapeutic exercises may need to be tailored to accommodate cognitive limitations. Intense, multimodal programs (which may include passive, active, or resistive exercises; as well as gait, balance, and/or endurance training) may become overwhelming for some patients, such as:

• Those with limited attention spans
• Those who are easily over-stimulated by verbal instructions
• Those who become anxious/agitated when presented with excessive transitions between tasks

Physical therapists must often use nonlanguage interactions based on awareness of a patient’s tolerance for interpersonal engagement, cognitive fatigue, or sensory overload. Communication can be a major issue when working with patients with dementia, particularly in an instructional, task-oriented setting such as physical rehabilitation. Various communication strategies and teaching techniques for patients with dementia which may be helpful include:

• Verbal cueing: using short, simple, or one-step verbal instructions
• Visual cueing: pointing to an object or gesturing a movement
• Tactile cueing: taking a patient’s hand to indicate going for a walk
• Mirroring: serving as a “mirror” by demonstrating a desired movement to the patient
• Task breakdown: breaking down tasks into short, simple steps to be completed separately
• Chaining: after mastering the steps in a task, linking them together into one fluid movement
• Active-assisted facilitation: taking the patient’s hand or other body part and helping to move it through a desired motion
• Muscle memory training: training a person’s procedural memory via motor repetition, in order to help the body more automatically respond to changes such as uneven or unstable surfaces

Physical therapists may involve the patient’s family and caregivers in the treatment plan, instructing in strategies for maintaining routines and using cues to initiate motor tasks. Family education may include ergonomic training to help family members/caregivers more safely perform tasks such as how to safely assist patients with bed mobility, transferring, and ambulation, as well as how to correctly use and maintain adaptive equipment or assistive devices. Ergonomic education and home safety assessments may help minimize risk of injury to both patients and caregivers.

In later stages of the disease, when cognitive decline is more pronounced, physical therapy interventions may shift to focus on more palliative measures, such as:

• Slowing the rate of functional/motor decline
• Instructing caregivers in proper joint positioning/mobilization to minimize risk of contractures
• Instructing caregivers in appropriate patient positioning/mobilization to minimize risk of pressure injuries or skin tears
• Instructing caregivers in the use and maintenance of higher-level assistive equipment, such as mechanical lifts, wheelchairs, etc.

Home assessments and safety recommendations can help make the home environment safer and may help delay the need for facility-based care (Staples, 2021; Sponholz, 2021).

Speech-Language Pathology

The speech-language pathologist (SLP) plays a major role in treating persons with dementia. SLPs manage cognitive, communication, and swallowing deficits that are associated with dementia. SLPs assess, diagnose, and treat the cognitive aspects of communication, which includes attention, memory, sequencing, problem-solving, and executive functioning, and help with strategies that preserve these functions for as long as possible. They educate caregivers about communication difficulties and provide strategies to facilitate effective communication.

As the disease progresses, the Alzheimer’s patient may develop difficulty with swallowing resulting from reduced muscle strength and coordination, which can lead to aspiration and, consequently, pneumonia. SLPs make diet modification recommendations consisting of altering the viscosity, texture, temperature, or taste of a food or liquid to facilitate safety and ease of swallowing and to provide additional sensory input for swallowing. Postural techniques involve adjusting the patient’s posture or position during feeding, aimed at protecting the airway and providing safe transit of food and liquid (ASHA, 2021).