Abstract
Occupational therapy practitioners play a significant role in supporting adults with Alzheimer’s disease and related major neurocognitive disorders, as well as their caregivers, through all phases of the disease process. This editorial highlights the systematic reviews completed in collaboration with the American Occupational Therapy Association’s Evidence-Based Practice Project that summarize the evidence for the effectiveness of interventions within the scope of occupational therapy practice for this population. Readers are encouraged to translate and integrate this updated knowledge into everyday practice.
Stacy Smallfield, DrOT, OTR/L, BCG, FAOTA
The numbers are staggering. Every minute of every day, another adult in the United States is diagnosed with Alzheimer’s disease (AD; Alzheimer’s Association, 2017). More than 5.5 million U.S. adults age 65 yr and older—1 in 10—are living with AD; however, by 2050, that number could grow to almost 14 million if we are unable to find a way to prevent or cure the disease (Alzheimer’s Association, 2017). Additionally, AD is the most expensive health condition in the United States; we will spend 1 of every 5 Medicare dollars on the disease, which has serious implications for the viability of the Medicare system (Alzheimer’s Association, 2017). Clearly, AD is one of the largest public health epidemics America has ever seen.
AD accounts for the majority (60%–80%) of cases of what was formerly termed dementia but is now called major neurocognitive disorder (NCD; e.g., vascular dementia, dementia with Lewy bodies, frontotemporal dementia; Alzheimer’s Association, 2017). In addition to the millions of adults currently living with major NCD, the lives of family, friends, and caregivers are touched by the disease. Adults with AD live an average of 8 to 10 yr after diagnosis (Alzheimer’s Foundation of America, 2016) and therefore require a long-term approach to care and support. In 2016 alone, more than 15 million adults in the United States provided more than 18 billion unpaid hours of care for those with major NCD at an estimated value of $230 billion (Alzheimer’s Association, 2017). Because of the additional demands placed on them, caregivers experience challenges to overall health and well-being, including physical, emotional, and financial decline, at a rate higher than for caregivers of older adults without dementia (Alzheimer’s Association, 2017).
We know that major NCDs are not a normal part of aging. Rather, they are progressive diseases that impair the ability to remember and think clearly and thereby affect the ability to function and participate in everyday life (Alzheimer’s Association, 2017). Adults with dementia experience difficulty completing daily routines, solving problems, and orienting to time and place. They frequently misplace items, withdraw from social engagements, and experience changes in personality (Alzheimer’s Association, 2017). In short, adults with major NCD experience significant barriers to occupational performance, which have tremendous consequences for their well-being and quality of life (QOL).
Occupational therapy practitioners play a significant role in supporting those with major NCDs, as well as their caregivers, through all phases of the disease process. Our unique knowledge of the person, the environment, and the power of occupation, in addition to our skills in therapeutic rapport, task analysis, and client-centered care (American Occupational Therapy Association [AOTA], 2014), make us critical members of interprofessional health care teams supporting adults with major NCD and their caregivers.
Knowledge Synthesis
This special issue of the American Journal of Occupational Therapy focuses on the urgent need for evidence-based occupational therapy interventions for adults with AD and related major NCDs and their caregivers. By describing interventions backed by research, the content in this issue provides readers with specific strategies to support this population. Given that approximately 50% of occupational therapists and nearly 65% of occupational therapy assistants in the United States provide services to adults with dementia (National Board for Certification in Occupational Therapy, 2013a, 2013b), there is great need for occupational therapy practitioners to access the latest evidence for effective intervention. Use of the latest evidence in practice not only ensures high-quality care but also demonstrates our ethical responsibility to use interventions within the scope of occupational therapy practice that are current and evidence based (AOTA, 2015).
Consistent with this responsibility to deliver evidence-based occupational therapy, teams of researchers collaborated with AOTA’s Evidence-Based Practice Project to examine scholarly literature relevant to occupational therapy practice with adults with AD and related major NCDs and their caregivers. Following previous reviews (Jensen & Padilla, 2011; Letts et al., 2011; Padilla, 2011a, 2011b), three questions were used to organize the current systematic reviews and update our current understanding:
What is the evidence for the effect of environment-based interventions on behavior, perception, and falls in adults with AD and related disorders?
What is the evidence for the effectiveness of interventions designed to establish, modify, and maintain occupations for adults with AD and related disorders?
What is the evidence for the effect of educational and supportive strategies for caregivers of adults with AD and related major NCDs on the ability to maintain participation in the role?
In combination, the research teams reviewed almost 7,000 abstracts for potential inclusion in this project, with 137 articles included in the final summaries of evidence. From the articles reviewed, the research teams found strong evidence for several interventions occupational therapy practitioners should routinely offer to adults with major NCD and their caregivers. Just as it is likely that medical intervention for this population warrants a multicomponent approach to produce noticeable results (Bredesen, 2014), occupational therapy interventions to support adults living with dementia and their caregivers may also need to involve multiple components to achieve the outcomes of enhanced performance, participation, well-being, and QOL.
Reviewing literature regarding environment-based interventions that address the outcomes of behavior, perception, and fall prevention for adults with AD and related major NCDs, Jensen and Padilla (2017) found strong evidence and therefore recommend routine use of ambient music (except at mealtime); multisensory interventions; and private, personalized rooms to positively influence the behavior of adults with AD and related major NCDs. Similarly, the evidence is strong for the use of monitoring devices to prevent falls in the home.
In their review of literature describing interventions designed to establish, modify, and maintain occupations for adults with AD and related major NCDs, Smallfield and Heckenlaible (2017) found strong support for occupation-based interventions to enhance the performance of daily activities. They also found strong evidence supporting routine use of physical exercise programs to enhance occupational performance and delay functional decline, use of errorless learning strategies to maintain the performance of activities of daily living (ADLs) and instrumental ADLs, and use of multicomponent interventions for overall QOL. The results of this review clearly point to the need for occupational therapy practitioners to routinely offer multicomponent interventions including familiar daily activities, physical exercise, and errorless learning to adults with major NCD. Our knowledge and rich history of the use of habits and routines make us well suited to collaborate with adults with major NCD and their caregivers to develop habits and routines around integrating physical exercise into daily life.
When reviewing literature on educational and supportive interventions for caregivers, Piersol et al. (2017) found strong evidence to support engagement in professional-led support groups to improve caregiver psychosocial well-being and QOL. Additionally, cognitive–behavioral interventions that help caregivers reframe distressing beliefs serve to reduce anxiety, depression, and stress. Interactive cognitive–behavioral interventions with caregivers were found to be more effective than educational materials alone. Several single-component interventions, including communication skill development between the adult with major NCD and the caregiver, memory aids for improved interactions between the two, and mindfulness and stress reduction training to reduce caregiver stress and burden, are supported by strong evidence and should be routinely offered.
In addition to these systematic reviews, this issue includes original research and systematic mapping reviews from scholars in the field who continue to contribute to our body of knowledge of promising interventions with this client population. DiZazzo-Miller, Winston, Winkler, and Donovan (2017) conducted a randomized controlled trial introducing caregivers of adults with dementia to an ADL training program. They found significant differences between the intervention group and the control group in ADL knowledge at posttest and 3-mo follow-up, indicating a promising program for teaching caregivers of adults with dementia how to assist with ADL tasks safely and effectively.
In a mapping review, Wood, Hoesly, Rose, and McLure (2017) found 10 research articles discussing the use of canine-assisted therapies for adults with dementia in institutionalized settings. These studies support the feasibility of using animal-assisted therapy models in institutional settings and the positive effects such models can have on QOL.
Gagnon-Roy et al. (2017) completed a scoping review of literature regarding intelligent assistive technology use to address home safety for adults with dementia. Although four types of technologies (monitoring technologies, tracking and tagging technologies, smart homes, and cognitive orthoses) have promising implications for enabling adults with dementia to remain at home and independent for longer periods, further research is needed to determine best practices for the integration of these technologies into their plan of care.
Clearly, there is a growing body of research in the area of major NCD on a variety of intervention strategies. Occupational therapy practitioners working with this client population are encouraged to monitor promising interventions that have implications for practice and to be actively involved in opportunities to contribute to these clinical research efforts.
Knowledge Translation
Dissemination of systematic reviews and original research is one small step on the journey of translating knowledge into everyday practice with this client population. Just as we have a growing body of evidence-based interventions for adults with major NCD and their caregivers, we have a growing body of evidence showing us that knowledge translation, or the integration of health science research into practice, has not kept pace with evidence generation (Agency for Healthcare Research and Quality, 2015). Until we apply this evidence, it is useless. The purpose of knowledge translation is to bridge the gap between what we know about best practices from research and the application of these findings in practice (Graham et al., 2006). I expect that just as evidence-based practice has been a major focus of health science research in the past 20 yr, knowledge translation will be a focus in the next 20 yr.
Occupational therapy practitioners working with this population can lead the way in knowledge translation efforts by applying the evidence in this special issue in their practice. Dissemination activities can include leading journal clubs with one or more of the articles in this issue and discussing a plan to implement the findings. Practitioners can advocate for private rooms for clients with dementia, when possible, or integrate an exercise program into the daily routine of clients with major NCD. They can lead support groups for caregivers. Effective knowledge translation requires the engineering of best practices into one’s everyday work with this client population and influencing change within one’s work context.
Conclusion
Occupational therapy’s role with adults with AD and related major NCD and those who care for them is one of support. We have more evidence-based intervention strategies today than ever before for this population. Yet, evidence alone is not enough. I challenge and encourage each reader to be an agent of change by integrating these interventions into everyday practice. Consider how you can tailor this research evidence to the unique features of your clients within the context in which you work. Only then can we maintain or improve the health and well-being of the clients we serve.
Footnotes
Acknowledgment
I thank Lauren Milton, Sue Berger, and Marian Arbesman for their thoughtful review and comments on an earlier version of this editorial.