|Year : 2017 | Volume
| Issue : 1 | Page : 48-53
Occupational therapy and advanced dementia: A practitioner survey
Megan E Gately1, Scott A Trudeau2
1 Department of Occupational Therapy, Tufts University, Medford; New England Geriatric Research, Education and Clinical Center, Veterans Affairs Medical Center, Bedford, Massachusetts, USA
2 Department of Occupational Therapy, Tufts University, Medford; New England Geriatric Research, Education and Clinical Center, Veterans Affairs Medical Center, Bedford, Massachusetts; American Occupational Therapy Association, Bethesda, Maryland, USA
|Date of Web Publication||20-Jun-2017|
Megan E Gately
Department of Occupational Therapy, Tufts University, 574 Boston Avenue, Medford - 02155, Massachusetts
Source of Support: None, Conflict of Interest: None
Aims: There is a gap in research about the role of occupational therapy (OT) in the United States with clients with advanced dementia. The purpose of this study is to explore OT practice with clients with advanced dementia within the United States by surveying practitioners. Study questions addressed interventions, including frequency and perceived effectiveness, intervention priorities, and barriers to practice. Methods: Survey methodology was employed to obtain the practice experience of the United States OT practitioners working with clients with advanced dementia. Results: Respondents (n = 95) were mostly occupational therapists with 10 years of practice experience, some reporting dual roles as administrators or fieldwork educators, working in long-term care settings. Respondents spent minimal time per week with clients with advanced dementia, providing primarily one-to-one interventions with varied perceived effectiveness. A wide range of interventions were aemployed. Therapist and perceived facility intervention priorities differed. The most frequently reported barrier to practice was client factors, followed by institutional barriers. Thematic analysis of qualitative questions further elucidates the practice experience of respondents. Conclusions: Findings provide insight into occupational therapy practice in the United States with clients with advanced dementia. This study describes interventions utilized with this population, barriers to practice, and perceived effectiveness of interventions. Qualitative entries describe care approaches for this population and challenges to providing care. While this study adds to the evidence base for occupational therapy's role in serving clients with advanced dementia, there remains a need for more research in this area.
Keywords: Dementia, occupational therapy, professional practice
|How to cite this article:|
Gately ME, Trudeau SA. Occupational therapy and advanced dementia: A practitioner survey. J Geriatr Ment Health 2017;4:48-53
|How to cite this URL:|
Gately ME, Trudeau SA. Occupational therapy and advanced dementia: A practitioner survey. J Geriatr Ment Health [serial online] 2017 [cited 2020 Jul 14];4:48-53. Available from: http://www.jgmh.org/text.asp?2017/4/1/48/208608
| Introduction|| |
Advanced dementia is the primary cause of death in the United States., The clinical course is characterized by challenging behaviors,, pain, and other distressing symptoms. Given the inefficacy of pharmacological strategies, effective nonpharmacological interventions must be developed that address the unique needs of those in the late stage of the disease. Occupational therapy (OT) is a discipline that maximizes physical and psychosocial well-being, including for clients with dementia. Extant literature describes effective strategies to address the neuropsychiatric and behavioral symptoms that accompany dementia, highlighting a role for OT to make a positive difference., However, the majority of OT research about dementia describes interventions for earlier disease stages , or describes practice patterns in countries such as the United Kingdom and Ireland., There is currently no study that addresses OT's role with advanced dementia within the United States. To address this gap in the current research, this study used survey methodology to investigate OT's role with this population.
| Methods|| |
This research study employed mixed methodology to explore the role of OT in the United States with clients with advanced dementia. This exploratory study utilized a descriptive survey to gather the practice experience, including interventions and barriers to practice of OT practitioners in the US. It was approved by the Institutional Review Board of Tufts University in Medford, Massachusetts. Participants received information about the study purpose, their voluntary participation, and the study author's contact information at the start of the survey, followed by required electronic consent.
Participants of this study were OT practitioners who identified as having some level of experience with clients in the advanced stage of the disease. OT practitioners were invited through a variety of electronic means to participate in this web-based survey. Invitations included an E-mail with a survey description to 1365 alumnae of Tufts University in Medford, Massachusetts. A brief survey description and hyperlink to the survey were also posted to four American OT Association (AOTA) Special Interest Section online forums, which are open access to about 42,000 registered AOTA members. Member visits to these sites are not tracked; therefore, it is not possible to calculate a response rate. Respondents could be occupational therapists or OT assistants with some level of practice experience with the population. Since this study is exploratory, we made the operational decision to not require that respondents have a certain level of practice experience; respondents were only excluded if they had no practice experience with the target population. Practice experience had to occur within the United States given that the survey aims were to obtain a baseline for OT practice with this population within the US. There were no other inclusion or exclusion criteria.
An investigator-derived survey instrument was developed based on an extensive literature search about OT interventions and nonpharmacological interventions for clients with dementia. The final survey consisted of a combination of 18 quantitative and qualitative questions that developed from extant literature. Ten questions addressed agreement to participate and practitioner demographics, including the US practice experience with population, years of general OT practice, practitioner race, age, gender, how participants heard of the survey, practitioner roles, and practice settings. Five questions addressed interventions being utilized, their perceived effectiveness, and intervention priorities. For these questions, respondents rated the frequency with which they utilized chosen interventions and their perceived effectiveness on four-point Likert scales. Respondents also rated their intervention priorities and perceived facility intervention priorities on a three-point Likert scale.
One question addressed barriers to practice so as to capture a comprehensive understanding of potential obstacles to delivering effective care to this population. Given the dearth of literature about OT practice with clients with dementia within the US, options for barriers were derived in part from articles addressing barriers to implementing an evidence-based dementia intervention in the Netherlands, OT practice with clients with dementia in Australia, and barriers to OT mental health practice in general. Two additional open-text questions asked practitioners to describe their ideal philosophy for clients with advanced dementia and to add anything they would like to provide respondents with an opportunity to qualitatively describe their experience. All survey questions were written to capture a range of roles, practice settings, interventions, and practice barriers. Questions were validated for content validity by three occupational therapists with practice experience with clients with Alzheimer's disease (AD), including clients in the advanced stage. Questions were edited for clarity by reviewers in an iterative process and were revised accordingly. Question format included multiple choice (n = 9), Likert-scale (n = 2), choose-all-that-apply (n = 3), and open text (n = 4).
A Qualtrics (Qualtrics Labs, Inc.,) hyperlink was used to publish the web-based survey. The survey link was kept open for 8 weeks, with reminder E-mails, and online forum posts sent at 1 week, 3 days, and 1 day before the survey closing.
Final survey data were exported from Qualtrics and analyzed for descriptive statistics using Microsoft Excel. Data were summarized and reported as percentages and frequencies. Qualitative data were analyzed using conventional content analysis as outlined by Hsieh and Shannon. Open-text responses were repeatedly read by authors, who identified key words and phrases. Recurrent keywords or phrases were then categorized and synthesized into themes which were utilized to triangulate and enrich the quantitative findings.
| Results|| |
Following are survey results in this order: Participants, interventions, and barriers to practice. Quantitative findings are interwoven with qualitative findings to enhance responses.
A total of 106 participants from all recruiting sources initiated the survey. Eleven responses were excluded from data analysis for either not meeting inclusion criteria, in that respondents indicated they had no clinical practice experience with clients with advanced dementia, or respondents did not complete any questions beyond demographics. Thus, the sample eligible for data analysis included 95 participants who answered the majority but not necessarily all questions. A category of “no answer” was included in data analysis for unanswered questions. Due to the fact that membership to the AOTA online forums is not tracked, we are unable to calculate a survey response rate.
The majority of respondents were Tufts University in Medford, Massachusetts alumnae (76%) who identified themselves as occupational therapists (95%) with over 10 years (72%) of OT practice experience and six or more years (53%) experience working with clients with advanced dementia. Nearly one-third (28%) reported experience in manager/supervisor roles and 22% reported serving as fieldwork educators. Of note, five respondents indicated that they were caring for a family member or friend with advanced dementia. The top three reported practice settings were skilled nursing facilities or nursing homes (26%), assisted living facilities (21%), and home care (18%). Only a portion of respondents (17%) reported spending more than a quarter of their current time/week with clients with advanced dementia. Given that there was no minimum stated requirement for the portion of respondents' caseload that included the target population, all survey results were included in data analysis. Respondents, characteristics and practice settings are presented in [Table 1].
Respondents reported providing mostly one-on-one interventions (78%) versus group interventions. The five most frequently utilized interventions were caregiver education/support, staff education/support, exercise or movement-based therapy, seating and positioning, and environmental modification. The five least frequently utilized interventions were Instrumental Activities of Daily Living (IADL's), such as money management and household tasks, followed by providing adaptive equipment, behavior management, contracture management/passive range of motion, and sensory stimulation. The five interventions that were perceived by respondents to be most effective were caregiver education/support, staff education/support, environmental modifications, and seating and positioning. It is worthy of note that the most frequently utilized interventions were not necessarily perceived as most effective and vice versa. A complete list of interventions ranked by frequency and effectiveness is given in [Table 2].
Respondents also completed open-text entries for the category of “Other,” or interventions not listed. Many of these written in qualitative entries described interventions already categorized. For example, one respondent filled in “providing feeding adaptive equipment” as an open-text entry though “providing adaptive equipment” was listed in the intervention table. Another response identified “toileting and ambulation schedules” as an intervention not listed, whereas ADL retraining was an available selection. Interventions that practitioners wrote in that did not easily fit within the provided list were pain management, animal-assisted therapy, aromatherapy, and massage. Other common entries included playing music and reminiscence-oriented interventions which included the use of photo reminders. Other entries described cognitive strategies, including the use of reading, games, memory books, or more broadly, “cognitive skills development.” Notably, the category of “other” was identified as the tenth most frequently utilized intervention but was perceived to be the second most effective intervention strategy.
Respondents also rated their intervention priorities and their perception of their facility's intervention priorities. The majority of interventions were rated as higher therapist priorities than facility priorities. Two exceptions were providing durable medical equipment and providing adaptive equipment, both perceived to be higher facility priorities than therapist priorities. The largest gaps between therapist and facility's perceived intervention priorities were for providing durable medical equipment, sensory stimulation, and environmental modifications. According to responses, seating and positioning and behavior management were the most equally rated priorities for therapist and facility. [Figure 1] shows therapist and facility intervention priorities.
|Figure 1: Therapist and facility intervention priorities. Note: This question included a 0-3 Likert scale, with higher mean totals indicating higher priority level|
Click here to view
Barriers to practice
Limiting client factors (81%) was the highest ranked barrier to practice. Multiple institutional factors followed, including conflicts between institutional priorities versus clients' needs (45%), productivity requirements (40%), inadequate treatment space or materials (40%), and reimbursement (40%). Infrequently cited barriers included ethical dilemmas (8%), lack of supervisory/organizational support (10%), and lack of confidence treating population (13%). Twelve percent of respondents identified “Other” as a barrier, filling in open-text responses such as, “families decline the need for OT,” and “lack of family support.” One respondent indicated encountering no barriers to practice with this population. A complete list of barriers to OT practice and reported frequencies is shown in [Table 3].
Below are results from the qualitative question about ideal philosophy for working with clients with advanced dementia. Of the 95 surveyed practitioners, 80% (76 respondents) completed the open-text question asking them to describe their ideal philosophy for OT practice with clients with advanced dementia. When analyzed, these qualitative responses were grouped into three themes. Two themes emphasized care approaches or aspects of care for those with advanced dementia, specifically dignity (Theme 1) and habilitation (Theme 2). A third theme described challenges to providing care (Theme 3) for this population.
Theme 1: Dignity
Respondents included rich description of clients at the advanced stage, who were described as “someone's grandparents” who should be treated with dignity and respect. Practitioners detailed the cognitive and functional challenges facing these clients, including their difficulty following commands, and challenges with new learning. Common recommended approaches included simplifying communication so as not to overwhelm the client. Nonverbal strategies such as therapeutic touch and taking a client-centered approach were also emphasized in working with a population that was described as made vulnerable by dependency on others:
- People suffer from dementia because we allow them to suffer by isolating them and treating them as subhuman
- These are the clients who can't speak for themselves.
Because of this increased dependency, clients were identified as at risk of “warehousing and custodial care approaches.” According to respondents, OT practitioners could counteract such approaches by focusing on clients' safety and comfort while celebrating successes. This aligns with OT's role in promoting occupational justice by focusing treatment outcomes on empowering clients  versus increasing institutional expediency. The optimal care outlined for clients with advanced dementia emphasized participation and quality of life, utilizing an habilitative approach versus a rehabilitative framework.
Theme 2: Habilitation
Acknowledging the limitations of advanced dementia, respondents emphasized what could aptly be described as an habilitative approach, which focuses on maintaining retained capacities and preventing further decline. First described by Raia and Koenig-Coste in 1996, habilitation services, as defined by the AOTA, “assist people in acquiring, improving, minimizing the deterioration of, compensating for an impairment of, or maintaining (partially or fully) skills, function, or performance for participation in occupation and daily life activities.” Different from rehabilitation, in which clients demonstrate improvement from baseline, the goals of habilitation are to preserve what is left in clients and to minimize further deterioration of skills and capacities. When applied to clients with degenerative disorders, such as dementia, habilitative treatment operates on the belief that “without continued maintenance intervention, performance would decrease, occupational needs would not be met, or both, thereby affecting health, well-being, and quality of life.” Comments that endorsed this philosophy included as follows:
- To provide (people with AD) the opportunity to actively participate in ADL's or leisure activities to decrease behaviors, increase independence, and increase quality of life
- Focus on maintaining as much independence as possible in spite of disease
- Maintain function as long as possible with automatic tasks.
Emphasizing a strengths-based approach as opposed to focusing on client limitations, entries indicated that by tapping into preserved capacities, clients may continue to engage in activity instead of requiring maximal assistance.
Theme 3: Challenges to care
Survey respondents described a number of challenges to providing care for clients with advanced dementia. Staffing constraints were identified as was the importance of an interprofessional collaborative approach so that staff could support one another and ensure carryover of OT recommendations. Practitioners emphasized the importance of the team in ensuring client-centered goals were met:
- One in which the administration, staff, and families have as a primary goal, that of providing the most nurturing structure available within the tolerances of the individual
- The treatment plan should be client-centered not for the convenience of caregivers.
Reimbursement and billing constraints were also highlighted as factors constraining care:
- I would want… to be able to dedicate more time and attention to pre- and post-transition periods
- Spend as much time as needed without need for perfect documentation to be reimbursed.
There is a clear sense from the respondents' comments that there is a significant gap between the perceived ideal of care and current practices, especially with regard to billing and collaborative practice.
| Discussion|| |
Findings from this study add to the evidence base about OT practice with an understudied population. Key findings describe demographic trends and settings of practitioners working with clients with advanced dementia, information previously not known. This study also details interventions utilized with this population; research sorely needed to understand current practice patterns with a population with specific care needs. Outlined barriers highlight institutional factors affecting current OT practice within the US, calling forth an opportunity to compare health-care systems across the globe to understand how payment strictures may affect practice patterns. Below are detailed key findings organized by topic: Participants, interventions, and barriers.
According to these survey findings, OT practice for clients with advanced dementia in the United States is carried out primarily by seasoned OTs working in long-term care settings or in the home. The majority of respondents spent less than a quarter of their time per week with clients with advanced dementia. This aligns with research set outside the US. reporting that of the majority of OT practitioners working in dementia care, <10% of clients had advanced dementia. This finding warrants further investigation to understand the factors that inform OT's reportedly limited role with this population.
For this study, interpreting the finding that clients with advanced dementia were only a minimal part of respondents' caseload is complicated by the fact that authors made a choice that respondents could have any level of clinical experience with this population. Therefore, we do not know if the limited time spent with this population reflects a service delivery model currently underutilizing OT for this population, as was postulated by McGrath and O'Callaghan who surveyed Republic of Ireland practitioners, findings which were bolstered by discrepancies between ideal and actual OT dementia practice as highlighted by Swinson et al., If this is the case, further exploration of potential barriers to accessing OT services across delivery systems may be justified. On the other hand, respondents' total number of hours worked per week was not asked, therefore, this finding could also reflect that respondents only have a part-time case load, perhaps due to their oft-cited dual roles in management or supervision/education.
Similarly, the reported average years of practice (>10) was higher than the 6 months of practice experience recommended to work with clients with AD. The fact that respondents had extensive practice experience with this population may suggest that this is an advanced practice area that requires increased specialization. In fact, very few (13%) respondents reported a lack of confidence treating this population, suggesting a perceived level of clinical competence. This could also indicate respondent bias, in that OTs with more practice experience with this population may have a vested interest in speaking on their behalf. Similarly, the relative lack of respondents reporting fewer years of experience does not necessarily mean they are not working with this population, but may instead reflect a lack of confidence commenting about their experience with clients with advanced dementia. Newer perspectives on this subject may enlighten discussion of current practice patterns and in particular challenges to practice. Further elucidation in future research is warranted to better understand this finding.
The top reported intervention was caregiver education and support. This aligns with research findings for OT and dementia in general from across the globe which identified a strong role for OT in supporting caregivers.,,,,,,,, Given that 47% of respondents work in a long-term care setting, further investigation of how OTs are applying caregiver strategies in institutional settings may be warranted. Staff education and support were also highly ranked. Given the vital role that both formal and informal caregivers play in supporting community-dwelling and inpatient clients with dementia, identifying ways to partner with caregivers at the advanced stage is vital. Since staff and family were also identified as potential barriers to practice, this finding warrants more investigation as to the nature of OT interventions for both professional and family caregivers supporting those with advanced AD.
Respondents reported using a wide range of interventions with this population, but with differing levels of effectiveness versus utilization. Further, OTs described administering interventions that they themselves do not perceive as valuable, perhaps indicating a struggle to find interventions that align with their practice setting's priorities. Of interest, the largest discrepancies between therapist and their perceived facility intervention priorities were for billable services, e.g., providing durable medical equipment and adaptive equipment. When interpreted alongside therapists' stated intervention priorities, which included caregiver and staff education (services which are difficult to bill for in many settings), the potential impact of cost on treatment planning is highlighted. While these factors require further study, they suggest a need to more flexibly define interventions for those with advanced dementia beyond what is currently most easily reimbursable. More research about differences between reimbursement structures within the United States and those of countries with socialized medicine (such as the United Kingdom) may help to elucidate how reimbursement informs practice patterns.
The stated gaps between frequency and effectiveness in interventions raise multiple points of discussion. Practitioners may be utilizing intervention strategies that are effective in the earlier stages but are less effective in the advanced stage of dementia. The fact that practitioners may be implementing strategies in the advanced stage that require client skills and abilities present in the mild-to-moderate stages is not surprising, given that the bulk of the evidence base is directed at the earlier disease stages. Further, practitioners' seeming reliance on clients' cognitive abilities in qualitative entries that described the use of cognitive training with this population is worth further study, given the predictable cognitive limitations of those at the advanced stages. Relatedly, the relatively high ranking of “other” intervention strategies in perceived effectiveness bolsters the notion that practitioners are exploring intervention strategies not present in the evidence base, corroborating the need for more outcomes research related to interventions in the advanced stage. There may also be a need for practitioner education about how to effectively tailor interventions to focus on individuals' level of functioning in the latter stages. The Tailored Activity Program, a community-based dementia intervention strategy that has recently been tested with hospitalized patients, holds promise as a potential intervention for clients with advanced dementia.
Survey respondents' overwhelming endorsement of “limiting client factors” (81%), as a practice barrier, requires more in-depth inquiry. While this finding could reflect the depth of impairment at the advanced stage and the challenges to devising effective intervention strategies for this population, it also highlights a limitation in survey structure. There were multiple institutional-level barriers presented, such as productivity requirements and reimbursement difficulties, and multiple barriers related to therapist factors, such as lack of confidence and lack of knowledge. However, there was only one client-level barrier offered; therefore, survey results may be skewed by the fact that respondents had only one choice for barriers related to the client. The one client-level barrier included multiple constructs (”behavior, inability to follow treatment protocols”), which, if broken out into separate categories, may have yielded more rich and incisive data. More sustained inquiry into client factors and their effect on practice, either through comparison with therapists' qualitative entries or through further research, is needed to fully understand this finding.
Several study limitations should be considered. As previously noted, there were limitations in the structure of certain questions that may make interpreting the findings difficult. For example, only one client-level barrier was provided, which may have negatively skewed results of that question. Additionally, the electronic posting recruitment method prevents calculating an accurate response rate, which may limit generalizability of findings. The lack of forced response allowed questioners to leave certain questions blank, resulting in variability in response numbers between questions. This, coupled with a relatively small sample size, may also limit generalizability. Another area that this survey failed to capture was factors that facilitate OT practice with people with advanced dementia, am omission that may have added useful information about positive influences for practitioners working with clients with advanced dementia as opposed to only highlighting constraining factors.
| Conclusions|| |
Given the projected numbers of persons with advanced dementia and their unique and varied occupational deficits, the need to better define a role for OT with this population is both timely and relevant. OT's blending of physical, spiritual, and psychosocial perspectives can empower therapists to meet the quality of life, and quality of death needs of these clients. OT has been recognized as a more cost-effective nonpharmacological intervention for those with dementia than usual care, raising OT's profile with this burgeoning population. Coupled with the AOTA's recognition of AD and related dementias as an emerging practice area, and recent changes within the United States to reimbursement policy allowing for habilitation or maintenance goals for clients with chronically disabling conditions, OT is well-positioned to establish itself as a holistic provider for clients with AD throughout the disease course. While research describes a role for OT practitioners across the globe working in this area, current OT practice in the United States, this study reveals, may be constrained by various factors, including billing and reimbursement. To fully appreciate the impact of such practice barriers on treatment planning with this highly vulnerable and growing population, as well as to define best practices in this area, further research is needed, including comparison between therapist approaches within different health-care contexts. While these study findings should be interpreted with caution, they provide a baseline of current OT practice with clients with advanced dementia in the US. This study enhances current literature about OT practice with a vastly understudied but growing population – clients with advanced dementia – while offering insights to inform further studies in this area.
This work was conducted as part of a post-professional Occupational Therapy Doctoral program at Tufts University. I would like to thank my committee members, Dr. Scott Trudeau, Dr. Linda Tickle-Degnen, and Dr. Kathy Horvath, as well as peers of the OTD program, for their guidance and support.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
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[Table 1], [Table 2], [Table 3]