Occupational Therapy Practice Guidelines for Adults Living With Alzheimer’s Disease and Related Neurocognitive Disorders

AD and Related NCDs

Clinical recommendations are the final phase of the synthesis of systematic review findings. The findings for each systematic review question are graded in terms of how confident a practitioner can feel that using the interventions presented in the evidence will improve the outcomes of interest to their clients. The grade is based on the specificity of the intervention, number of studies supporting the intervention, levels of evidence of the studies, quality of the studies, and significance of the study findings. Interventions included in the clinical recommendations are specific to a population, and the articles that describe them provide sufficient detail for practitioners to understand the intervention and the outcomes of interest.

Describing the strength of clinical recommendations is an important part of communicating an intervention’s efficacy to practitioners and other users. The recommendations for these Practice Guidelines were evaluated and finalized by AOTA staff, the AOTA research methodologist, and the systematic review briefs and Practice Guidelines authors. AOTA uses the grading methodology provided by the U.S. Preventive Services Task Force (2018) for clinical recommendations. The clinical recommendations pertaining to each review, along with the studies’ level of evidence and supporting details, are presented in Table 1.

For the purposes of these Practice Guidelines, we report recommendations graded A, B, and D, the grades that best support clinical decision-making:

A: There is strong evidence supporting the intervention for eligible clients. Strong evidence was found that the intervention improves important outcomes and that benefits substantially outweigh harms.

These grades are reported in Table 1 and designated with green, indicating should consider if appropriate (A), or yellow, indicating could consider if appropriate (B). None of the studies included in this review reported adverse events or harms related to the interventions evaluated (D).

The complete findings from the systematic review can be found in the Systematic Review Briefs on this topic published in the American Journal of Occupational Therapy (Green et al., 2023; Metzger et al., 2023; Rhodus et al., 2023; Smallfield et al., 2023). As always, practitioners’ clinical decisions should be informed by the evidence presented in these Practice Guidelines in combination with their clinical experience and the client’s particular goals.

Expert Opinion Clinical Recommendations for Occupational Therapy Interventions for Adults Living With AD and Related NCDs

Expert opinion clinical recommendations were developed for important/common clinical interventions that did not reach the level of an evidence-based clinical recommendation because of a lack of research. The Practice Guidelines team analyzed the evidence and generated intervention topics that could be presented as an expert opinion recommendation. The team drafted the recommendation and provided information supporting the use of the intervention. This was then presented to an expert consensus panel (five people) comprising subject matter experts from both academic and clinical settings to review for usefulness of the recommendation, appropriate wording, quality of the support provided, and their overall level of agreement that the recommendation should be included in the Practice Guidelines. Feedback from the expert panel was used to revise the recommendation, and the revisions were sent back to the experts until a consensus was reached. Expert opinion recommendations are always considered to be at a higher risk of bias because there is a lack of research evidence to support them; they will always have a low strength of evidence. In the absence of high-quality published research, expert opinion is the best knowledge available to guide practice.

Clinical Reasoning Considerations

Very rarely will practitioners find an evidence-based intervention that perfectly fits their clinical setting and the client’s specific needs. Occupational therapy practitioners need to consider several questions as they evaluate the research and determine whether they can use an intervention, or adapt it in a well-reasoned way, to exactly meet the client’s needs (Highfield et al., 2015):

Exactly what intervention do I need to provide?

What types of client outcomes am I looking for?

To modify or adapt evidence-based interventions in practice, practitioners must plan and proactively think through the changes are going they need to make to fit the intervention to the client and practice setting. In addition, they must document how and why they altered the researched intervention so others in their setting know how to implement the intervention and why the changes were made. If an intervention must be adapted extensively, it may not be the right fit for the situation and is probably not right for the client or setting. If the practitioner finds that the intervention does not suit the client, they should not use that intervention. Clinical interventions should be as similar as possible to the interventions used in the research.

Case Studies and Evigraphs

The case studies in this section illustrate how occupational therapy practitioners can translate evidence from the systematic review to professional practice when collaborating with adults living with AD and related NCDs. Each case study highlights interventions that are supported by evidence and expert opinion. We provide a CPT^® billing code 1 (American Medical Association, 2020) for each intervention to aid translation into professional practice.

Evigraphs based on clinical recommendations were developed by the authors and AOTA staff to assist practitioners with clinical decision-making (Figures 1 – 3). Practitioners must consider each potential intervention in relation to the client’s individual goals, interests, habits, routines, and environment and choose interventions that strongly align with or are supportive of these factors in the context of the client’s occupational profile. It is important to note that the evigraphs in these Practice Guidelines present simplified examples of the decision-making processes occupational therapy practitioners might use to address their specific clients’ goals.

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Figure 1.

Interventions to improve cognitive function for individuals living with dementia and mild cognitive impairment.

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Figure 2.

Interventions to improve behavioral and psychological symptoms for individuals living with dementia and mild cognitive impairment.

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Figure 3.

Interventions to improve mental health outcomes for care partners of individuals living with dementia.

Occupational Profile

Malcom (he/him/his), age 74 yr, resides at home with his wife, Betty (she/her/hers), age 53 yr. He was diagnosed with AD at a moderate stage without mood disturbance. Malcom is a retired librarian who used to enjoy traveling in an RV with his wife and square dancing at the local community center. He was diagnosed with AD 3 yr ago, and his medical history includes primary generalized osteoarthritis and hypertension.

Malcom and Betty have lived in the same in single-family home for 32 yr. His environmental supports include an involved family, most significantly their daughter, who lives 5 min away and provides respite for Betty 2–3×/wk while Betty runs errands. Their daughter has voiced concerns with the amount of assistance her dad needs and worries about the strain on her mother. She has asked her mother if they should consider finding a nursing home or paid caregivers for him.

According to Betty, Malcom is having trouble getting onto and off the toilet because of weakness, and he recently sustained a fall, resulting in a brief emergency room visit, but he did not have a serious injury. He now requires increased assistance from Betty for initiating and completing morning dressing tasks. Betty reports it can take him over 1 hr to get out of bed when prompted because of decreased initiation and poor volition. Out of frustration, Betty usually ends up dressing Malcom to avoid his angry outbursts. Betty reports their relationship is strained because of the increased time and assistance for ADL tasks, and she expresses feeling depressed. Malcom’s primary care physician referred him to home health occupational therapy at his last checkup after the fall.

Occupational Therapy Initial Evaluation and Findings

A sample of assessments an occupational therapist might complete during the initial evaluation is included in Table 2. A home health occupational therapist completed the evaluation with the Occupational Therapy Profile Template (AOTA, 2020) and the Outcome and Assessment Information Set (Centers for Medicare & Medicaid Services [CMS], 2019) to start the plan of care for Malcom. Malcom’s goals were as follows:

Long-Term Goal 1: Malcom will demonstrate functional transfers in the home environment with supervision, with use of compensatory strategies and adaptive equipment as needed, provided by trained care partner, by the sixth visit.

Occupational Therapy Interventions

On the basis of the assessment findings, the occupational therapist anticipated that Malcom would meet the outlined goals in two sessions/wk for 3 wk, with each session lasting about 45 min. Emphasis was placed on care partner training with carryover of prescribed strategies at discharge to slow further declines in function. The occupational therapist collaborated with the speech-language pathologist on consistent cueing strategy use, comparison of cognitive evaluation results, and ensuring that the intervention did not result in a duplication of services. The interventions described in the sections that follow are examples that could be implemented by an occupational therapy practitioner (an occupational therapist or an occupational therapy assistant).

Outcomes

After the completion of six sessions, the occupational therapist reevaluated Malcom’s progress. Betty had developed strategies and techniques to facilitate Malcom’s ability to successfully age in place. She was able to continue to implement seated-chair square-dancing classes she streamed on their television 2×/wk. His functional balance improved slightly, as indicated by an improved score on the Berg Balance Scale (Berg et al., 1992) of 41, indicating that he was at a low risk for falls. Although his score on the Barthel Index (Mahoney & Barthel, 1965) remained unchanged at discharge, he required less physical assistance for transfers and dressing, as indicated by all long-term goals being met. Betty also implemented a multisensory approach in assisting her husband in the morning by playing music and using high-contrast visual cues for transfers. She understood her husband’s strengths based on his level of impairment and was able to successfully cue him to increase his independence with ADLs and participation and functional mobility. Table 3 lists the additional discharge results. The Montreal Cognitive Assessment (Julayanont et al., 2013) and the Global Deterioration Scale (Reisberg et al., 1982) were not reassessed at discharge because Malcom’s cognitive functioning was not expected to change as result of the intervention.

Malcom and Betty were then referred by their primary care physician to the Guiding an Improved Dementia Experience (GUIDE) Model (CMS, 2023). After intake was completed by the care navigator, an occupational therapist, as a part of the interdisciplinary team, completed a home evaluation of both Betty and Malcom. The therapist determined Malcom had moderate complexity with a care partner and worked with the couple to develop a person-centered care plan to help Malcom maintain his gains and ensure Betty’s emotional well-being. Additional services provided through the GUIDE model include 24/7 access to a member of the care team, ongoing monitoring and support, referral and support services, care partner support, medication management, and care coordination (CMS, 2023). As a part of care partner support, Betty received respite support on a limited basis while she visited her sister for a long weekend.

Occupational Profile

Maria (she/her/hers) is an 82-yr-old woman who resides in the memory care community of a skilled nursing facility (SNF). She grew up in a rural area and raised four children with her partner. She worked as a school bus driver and enjoyed knitting, watching sports, and cooking for her family. She was diagnosed with AD 5 yr ago, and her partner cared for her at home. After her partner’s death, her children were unable to manage her care as her dementia progressed to a moderately severe level. Thus, they transitioned her to a SNF. Her daughter, who lives locally, visits once each week, and she particularly lights up when her grandchildren spend time with her.

Maria is able to walk and to self-feed. Until recently, she dressed herself, needing only occasional assistance with socks and shoes. Her vision and hearing are grossly intact. She has fallen once since arriving at the SNF but did not sustain significant injury as a result. Maria’s past medical history includes diabetes mellitus, hypertension, osteoarthritis with a previous right total knee arthroplasty, and cataract replacement in both eyes. After her knee replacement 10 yr ago, she began using a walker for stability and safety when ambulating.

After her initial transition into the SNF community 1 yr ago, Maria was doing well; she participated in activities, accepted assistance with self-care, and would often be found smiling during visits with family. However, over the past few months her cognitive abilities have declined. She has lost interest in most activities, has been sleeping more during the day, is tearful at times, and has been resisting care. During family visits, although initially excited, she quickly fatigues and closes her eyes. The nursing staff asked the physician for a referral to occupational therapy services to evaluate and develop a care plan to address her decline in function.

Occupational Therapy Initial Evaluation and Findings

A sample of assessments an occupational therapist might complete during the initial evaluation is included in Table 4. An occupational therapist completed the initial evaluation to start Maria’s plan of care, including use of the Occupational Therapy Profile Template (AOTA, 2020). Maria’s goals were as follows:

Long-Term Goal 1: In 6 wk, Maria will navigate to the dining area from her room with a rolling walker, with standby assistance, with fewer than three verbal–visual–tactile cues for pathfinding and encouragement provided by competent care partner.

Occupational Therapy Interventions

Maria was seen for skilled occupational therapy services 3×/wk for 3 wk, decreasing to 2×/wk for 3 wk, to address decreased participation in ADLs because of her progressive dementia, depressive symptoms, and pain. Sessions were a combination of individual and group based. The sessions described in the sections that follow are example interventions that could be implemented with Maria by an occupational therapy assistant after the evaluation was completed by the occupational therapist. The occupational therapy assistant collaborated with the occupational therapist, who continued to evaluate Maria’s response to the intervention plan.

Outcomes

After the intervention was complete, Maria was more willing to participate in ADLs and was able to complete them with contact guard assist and intermittent visual–verbal–tactile cues for initiation and sequencing. Maria met all goals with the exception of the long-term goal of ambulating to the dining area with standby-assist. Maria’s balance continues to be inconsistent, requiring contact guard assist to decrease her risk of falling. Maria spent longer periods of time alert during the day and, beyond afternoon naps, was rarely asleep during the day. This also appeared to decrease the number of times Maria woke up at night. Maria had fewer tearful episodes, and her affect appeared calmer and more relaxed. As a part of her maintenance program, Maria continued to participate in the reminiscence group and walking group to help maintain her gains. Her daughter reported that visits were more pleasant when they used the photo albums and the strategies discussed in therapy and had begun visiting more frequently. Maria was discharged to restorative nursing to continue to implement the maintenance program to slow further declines in function. The occupational therapist plans to participate in patient care rounds on Maria every 6 mo to identify functional declines requiring additional occupational therapy services. Table 5 lists more details about Maria’s discharge results.

Strengths

The review authors followed best-practice methodology to the best of their ability at every step of the process. The clinical recommendations in these guidelines come from recent, existing high-quality systematic reviews. The guideline team included practitioners, researchers, consumers, and subject matter experts. This methodology is a strength because it allowed for extensive time to conduct the assessment and synthesis of systematic reviews rather than conducting reviews that already exist. In addition, in these Practice Guidelines we include an expert opinion clinical recommendation for an important topic that did not emerge in our evidence-based clinical recommendations.

Limitations: Gaps in the Evidence

Gaps in knowledge exist when there is insufficient, imprecise, inconsistent, or biased information in the literature about an intervention (Robinson et al., 2011). Gaps also exist when the literature is not sufficient to answer a clinical question or the methodology used to synthesize research evidence does not capture certain topics.

A lack of research supporting specific interventions does not mean practitioners should not use those interventions. When working with clients, practitioners considering specific interventions without enough evidence to qualify as evidence-based practice should use expert knowledge and their own training and experience to guide practice. In this section, we pinpoint important gaps in the evidence for interventions and approaches practitioners may consider appropriate for use.

Occupational therapy practitioners need to think about the elements of evidence-based practice as they evaluate these guidelines in light of gaps in the literature related to their clinical practice. Practitioners should consider the following questions when they identify these gaps (Gutenbrunner & Nugraha, 2020):

What evidence exists?

What are the best practices associated with providing services to this client population?

In the following sections, we present additional information and common occupational therapy interventions for adults living with AD and related NCDs that are not addressed in these guidelines because of a lack of relevant evidence.

Alternative and Expanded Service Delivery Models

Much of the evidence supporting occupational therapy intervention for adults living with AD and related NCDs is focused on direct service provision, specifically individual or group intervention sessions in face-to-face settings. However, there is a lack of evidence that supports alternative service delivery or regulatory models. For example, telehealth has recently received increased attention as a feasible way to enhance access to health care services (Feldhacker et al., 2022); however, telehealth models of care for adults living with AD and related NCDs and their care partners are limited in the current literature. Similarly, although research suggests that occupational therapy interventions may slow or delay the progression of AD and related NCDs, more evidence is needed (Ham et al., 2021). There are many occupation-based interventions within the scope of occupational therapy that promote health. Developing health service delivery models that include occupational therapy within primary and preventative care may not only maintain functional capacity but also lead to cost savings over time (Clark et al., 2012; Hand et al., 2022). In addition, many adults living with AD and related NCDs benefit from palliative care as the disease progresses. This can include pain management, education, emotional support, or care partner support. Occupational therapy has the potential to play an important role in palliative care; however, the outcomes associated with this have not been extensively studied (Eva & Morgan, 2018). The need for palliative care services for this population will continue to grow; occupational therapy practitioners should work to create a clearly defined practice to address the needs of adults living with AD and related NCDs and their care partners in this setting. Finally, occupational therapy professionals must consider social determinants (drivers) of health. Information regarding social determinants (drivers) must go beyond documentation. Occupational therapy service delivery may be enhanced with the explicit identification of both core and culturally relevant components of intervention to increase adherence and improve health outcomes (James et al., 2021). In summary, alternative service delivery models will increase access to occupational therapy services for all populations, including those who are marginalized.

Occupation-Based Evaluation and Intervention

Occupational performance is the hallmark of occupational therapy practice. It is important to address all domains of occupational therapy practice (AOTA, 2020); however, engagement in meaningful occupation is the end goal. Therefore, it is important to engage adults living with AD and related NCDs in the authentic occupation during intervention as the ability to generalize progressively declines. Additional research is needed to substantiate the long-held belief that development of habits and routines can improve occupational performance. Much of the existing literature for adults living with AD and related NCDs focuses on evaluations and interventions that address client factors, performance skills, and context rather than occupation and does not consistently measure outcomes at the level of occupation. Eating and feeding are the occupations most often addressed in the literature (Fetherstonhaugh, et al., 2019; Herke et al., 2018; K. H. Lee et al., 2020; Li et al., 2021; Lin et al., 2010; Lui & Kim, 2021); however, none met inclusion criteria for this review, which was limited to systematic reviews of randomized controlled trials. Other occupations were far scarcer, or absent, in the research literature, both as interventions and outcomes, limiting clinicians’ ability to reliably use the information in practice (Cibeira et al., 2020; Ham et al., 2021; Tan et al., 2022). Occupation should be a priority at all phases of the occupational therapy process to enhance participation and meaningful engagement. To be specific, more use of occupation is needed to clearly demonstrate the distinct value of occupation as both a process and product. To achieve this outcome, evaluation tools and intervention strategies used in research must include occupation and must be accessible and useful to clinicians.

Dyadic Approaches: Adults Living With AD and Related NCDs and Their Care Partners

Although evidence exists to support occupational therapy interventions to address care partners of adults living with AD and related NCDs (Wang et al., 2021), especially in relation to depression outcomes (Liu et al., 2021), numerous gaps in the literature exist (Butler et al., 2020). Occupational therapy interventions have traditionally focused on individual client outcomes, but a dyadic approach (i.e., one that includes both the client and the care partner) may be another option (Van’t Leven et al., 2018). There is, however, a critical lack of evidence to support a dyadic approach to interventions. Progression of traditional maintenance programs (e.g., routine physical exercise or a routine sensory protocol) toward a more dyadic approach is needed to support the complex needs of adults living with AD and related NCDs and their care partners. Such programs can maximize functional capacity and occupational engagement. Although these programs may be beneficial, additional evidence is needed to indicate the role of occupational therapy in care partner training, measurement of care partner capacity, and relationships between care partner capacity and care recipients’ functional performance. Additional high-level evidence to support care partner and dyadic occupational therapy interventions, such as training to improve knowledge to best facilitate occupational performance outcomes, is needed. Evidence indicates that psychosocial interventions focused on the needs of the dyad—specifically, functional domains, including ADL/IADL dependence and care partner proficiency—improve outcomes for both (Van’t Leven et al., 2013). Therefore, care partners’ needs and capacity, as well as available resources, are important components for occupational therapy practitioners to consider when designing goals and interventions (Rouch et al., 2021).

Person-Centered Assessment and Intervention for Adults Living With AD and Related NCDs

Aging increases differences among people in terms of unique occupational preferences, life choices, and agency (Light et al., 1996). Dementia also presents with unique trajectories of functional abilities, creating a diversity of performance patterns and engagement (Duara & Barker, 2022). In addition, living environments among older adults are highly heterogeneous. These factors warrant the need for person-centered assessment and care tailored to the complexity of each unique adult. Assessments of the environment, autonomy, individual agency, available resources, and care options promote care plans that contribute to optimal occupational engagement. For example, assessment and integration of sensory functioning and processing abilities are needed to maximize behavioral regulation and functional performance for adults living with AD and related NCDs (Cusic et al., 2022; Laver et al., 2022). There is a lack of standardized assessments for adults living with AD and related NCDs that address neurological function as it is related to occupational performance. Just as there are developmental assessments for pediatric populations, greater evidence is needed to support holistic evaluations related to aging with neurodegenerative conditions (Rhodus et al., 2022). When working with this population, occupational therapy practitioners should consider key mechanisms related to performance patterns and capacity, especially related to neurological function and the environment to ensure best practice.