Australian Occupational Therapy Journal (2014) 61, 92–101
doi: 10.1111/1440-1630.12081
Research Article
Occupational therapy and dementia care: A survey of practice in the Republic of Ireland Margaret McGrath and Claire O’Callaghan School of Health Sciences, College of Medicine, Nursing and Health Sciences, National University of Ireland, Galway, Ireland
Background/aim: There is a growing body of research to support the role of occupational therapy in dementia care. However, little is known about the extent to which this research is translated into occupational therapy practice. This study addresses this gap by considering current occupational therapy practice in the field of dementia care in Ireland. Methods: A cross-sectional online survey was used to gather data about current practice. Convenience sampling and snowball recruitment techniques were used to recruit occupational therapists. Data were analysed using a combination of descriptive statistics and content analysis. Results: Forty-seven therapists responded to the survey. The majority of respondents worked in primary care and provided services for people with early stage or mild dementia. Assessment practices were primarily focussed on cognitive screening and functional performance. Limited attention was paid to occupational participation. Interventions typically addressed environmental modification, assistive devices and compensatory strategies. The ability of therapists to apply research evidence to practice appears to be strongly constrained by practice and organisational demands. Conclusion: There is a need for a global occupational therapy strategy to support knowledge translation in dementia care. At present although occupational therapists are aware of research evidence they face significant barriers in applying this evidence in practice.
Introduction
KEY WORDS ageing, assessment, cross-sectional survey, dementia, evidence based practice, intervention.
Occupational therapy has a significant role to play in dementia care (Arbesman & Lieberman, 2011) and there is a growing body of empirical research to support the use of occupational therapy interventions in many of the key areas of practice identified by the World Health Organisation (2012). Research evidence supporting occupational therapy practice in each of these areas will now be reviewed before considering the extent to which this evidence is translated into every day practice.
Margaret McGrath MSc, BSc (Hons) Cur.Occ., PGDip (Academic Practice); Lecturer in Occupational Therapy. Claire O’Callaghan BSc (OT); Occupational Therapist. Correspondence: Margaret McGrath, Discipline of Occupa tional Therapy, School of Health Sciences, Aras Moyola, National University of Ireland, Galway, Newcastle Road, Galway, Ireland. Email: [email protected] Accepted for publication 27 July 2013. © 2013 Occupational Therapy Australia
As a result of global ageing the incidence of dementia is set to increase rapidly in the next few decades. In 2010, there were approximately 35.6 million people in the world living with dementia and population estimates indicate that this number will increase to 115.4 million in 2050 (Alzheimer’s Disease International, 2010). Accounting for 11.9% of years lived with a disability due to a non-communicable disease (World Health Organisation, 2012), dementia is the leading cause of disability among older people throughout the world (World Health Organisation). The worldwide cost of dementia was estimated to be approximately US$604 billion in 2010 and the majority (42%) of these costs were related to the provision of social care by professionals and informal unpaid care by families and others (Alzheimer’s Disease International). Despite the increasing prevalence of dementia, and the significant consequences of dementia for both individuals and communities, most countries are unprepared to respond to the needs of people with dementia and their carers (World Health Organisation). The World Health Organisation suggests that multidisciplinary, intersectoral approaches to dementia care are needed and should focus on (i) ensuring early diagnosis; (ii) promoting physical health, cognitive functioning, activity and wellbeing; (iii) detecting and managing behavioural and psychological symptoms; and (iv) providing education and support for carers.
Occupational therapy and dementia care
Early diagnosis Early detection and diagnosis of dementia can allow the individual with dementia to take an active role in plan-
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ning for the future and making decisions about care (Alzheimer’s Disease International, 2012). Although limited research was identified relating to occupational therapy input in the diagnosis process, there is a growing interest in the role for rehabilitation professionals in the long-term follow-up of patients following early detection of mild cognitive impairment (Alzheimer’s Disease International). Mild cognitive impairment is a clinical diagnosis described as a transitional phase between normal ageing and dementia. Persons with mild cognitive impairment have cognitive complaints and diminished occupational performance but do not meet the criteria for dementia. Follow-up studies demonstrate that up to 80% of people with mild cognitive impairment will convert to Alzheimer’s disease within six years (Petersen et al., 2001). Ng et al. (2006) using a quasi experimental design found that for people with mild cognitive impairment, group occupational therapy programmes, which emphasised an educational approach and incorporated adaptive strategies to handle memory impairments had a positive impact on participants’ cognitive performance, level of depression and overall symptoms of dementia. McGrath and Passmore (2009) found that a brief occupational therapy home-based rehabilitation programme (one home visit per week for a period of between five and six weeks) which emphasised compensatory strategies and environmental adaption was valued by people with early stage dementia and their care givers. At follow-up two years later, 50% of the participants continued to use the strategies provided by the occupational therapist.
Promoting physical health, cognitive functioning, activity and wellbeing Padilla (2011a), following a systematic review of the research literature, concluded that there was strong evidence to support the use of activity modification by occupational therapists to enable people with dementia to continue to participate in meaningful self-care and leisure activities. Gitlin, Winter, Dennis, Hodgson and Hauck (2010) found that for people with moderate stage dementia, a combination of occupational therapy (10 sessions over four months per person) and advanced nursing (one face to face session and one telephone session) resulted in lower levels of dependence in instrumental activities of daily living and increased engagement when compared with a control group who received three telephone calls and educational materials. Chard, Liu and Mulholland (2009) report that a combination of environmental modifications and carer training (between one and three hours of therapy per individual), increased performance of activities of daily living by people with dementia residing in assisted living facilities. Graff et al. (2006) found that community-based occupational therapy (10 one-hour sessions over a period of five weeks per per-
son), focussing on the use of compensatory and environmental strategies, increased performance of activities of daily living among people with mild to moderate dementia. Similarly Dooley and Hinojosa (2004) found that a brief occupational therapy intervention with individualised recommendations for carers resulted in significant improvement in quality of life for people with mild to moderate stage Alzheimer’s dementia.
Detecting and managing behavioural and psychological symptoms Psychological symptoms such as depression, anxiety, agitation, hallucinations and delusions impact approximately 80% of nursing home residents with dementia and over 50% of people with dementia who live in the community (Monastero, Mangialasche, Camarda, Ercolani & Camarda, 2009). The primary focus of occupational therapy interventions in this area has been on environmental modification and carer training and no occupational therapy interventions were identified that specifically focussed on behavioural management. Padilla (2011b) reviewed the use of environmental modifications to address behavioural and psychological symptoms of dementia and suggested that there is some evidence from research outside of occupational therapy that supports the use of environmental modification in reducing the incidence of wandering behaviours. However, Padilla also noted that existing research is limited and that the possibility of causing psychological distress to people with dementia by the introducion of environmental modifications has not yet been discounted.
Providing education and support for carers of people with dementia In a systematic review of occupational therapy for carers of people with Alzheimer’s disease, Arbesman and Lieberman (2011) noted that there is strong research evidence relating to the effectiveness of occupational therapy interventions which focus on providing education about Alzheimer’s disease for carers, problem-solving, task simplification, communication and basic home modification. Gitlin, Hauck, Dennis and Winter (2005) found that the Home Environmental Skill-building Program, which consisted of a combination of active treatment (five 90-minute home visits and one telephone call over a period of six months) and maintenance (one home visit and three telephone calls over a period of 12 months), resulted in carers reporting improved skills, perceiving less need for help in supporting people with dementia and fewer behavioural disturbances when compared with carers who did not receive this intervention. Graff et al. (2006) and Dooley and Hinojosa (2004) both found that providing individualised recommendations for carers resulted in a significant reduction in carer burden. © 2013 Occupational Therapy Australia
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Health-care services for people with dementia in Ireland Health and social care services for people with dementia in Ireland have been described as limited and disjointed (Connolly, Gillespie, O’Shea, Cahill & Pierce, 2012). The majority of people with dementia (63%) live in the community, with a further 34% living in longstay residential care (Connolly et al.). Formal care services are focussed on residential care provision either in public (state funded) or private (for-profit) nursing homes. Family and friends typically provide services for people with dementia who remain living in the community on a voluntary (unpaid) basis (Connolly et al.). Rehabilitation services are provided through acute hospital services, primary care services and in some instances are available in public nursing homes. However, access to such services has been limited (Cahill, O’Shea & Pierce, 2012). In relation to occupational therapy in 2009 Begley (as cited by Cahill et al.) suggested that the lack of occupational therapy services utilised by people with dementia living in the community, may be due to the lack of occupational therapy services available and lengthy delays in accessing existing services. The levels of access to occupational therapy by people with dementia and their carers within acute hospital and public nursing homes is not known.
Translating occupational therapy research evidence into practice Although there is a significant body of research evidence to support occupational therapy practice in each of the key areas of dementia care the extent to which this evidence is used in daily practice is not clear. Only two published studies were identified which considered occupational therapy practice patterns in dementia care. A national study of occupational therapy practice for people with dementia in Australia found that occupational therapists faced significant challenges in implementing evidence-based practice for this group (Bennett, Shand & Liddle, 2011). The main barriers to implementing evidence-based practice were lack of time and practice setting constraints. Similar difficulties were reported by Van’t Leven et al. (2012) who explored barriers and facilitators to implementing an evidence-based occupational therapy programme guideline by a small sample of Dutch occupational therapists. In addition to time constraints, participants in this study also reported a lack of confidence in their ability to treat people with dementia in the home environment (Van’t Leven et al.). Given the relevance of occupational therapy for people with dementia it is important to investigate occupational therapy practice in this area and to consider factors that may support or impede the translation of research into practice. Such information is relevant both at a national level for the development of occupational therapy services and at international level to support
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ongoing efforts at knowledge translation in occupational therapy. This study contributes to this work by exploring occupational therapy assessment and intervention practices for people with dementia in Ireland.
Methods Design This study used a cross-sectional survey design to gather information from occupational therapists working with people with dementia and their carers. An Internet-based survey was chosen over a postal survey as Internet surveys are associated with higher rates of participation when targeting professional groups (Borque & Fielder, 2003). The survey was uploaded to an Internet survey site and participants were provided with a link to the site via an email invitation.
Participants The sample for the study was chosen using non-probability convenience sampling. Participants were eligible for inclusion in the study if they were working in Ireland as an occupational therapist with people with dementia or carers of people with dementia. We sought to include occupational therapists working with both the statutory and voluntary services and attempted to recruit participants from a wide variety of clinical settings (e.g. hospital, community, respite services and nursing home care). As there is currently no national register for occupational therapists working in Ireland, participants were recruited from a list of occupational therapists compiled from information from professional bodies, the telephone directory and senior managers in the health sector. An invitation email was sent to potential participants (n = 62) outlining the aims and objectives of the study together with a link to the online questionnaire. Snowball sampling methods were also used with all emails inviting recipients to send the invitation to participate in the study to colleagues.
Measure Data for the study were gathered using an adapted version of a survey of practice patterns of occupational therapists in Australia working with people with dementia (Bennett et al., 2011). This questionnaire is made up of five sections designed to gather information about participants’ (i) clinical setting and referral patterns; (ii) assessment and intervention practices; (iii) perceived barriers in the delivery of occupational therapy services; (iv) knowledge and educational needs relating to dementia care; and (v) demographic characteristics. Data were gathered using a combination of fixed response category options and open-ended questions. Fixed response category options were used to gather information about participants’ demographic and clinical practice characterisitics, while open-ended ques-
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tions were used to generate understanding of clinical reasoning, and percieved barriers and facilitators to practice. To increase the relevance of the survey to this study permission was sought and obtained from the authors to adapt the original survey so that it reflected the Irish context. Thus, questions relating to geographical areas of practice were changed. No other modifications were made to the survey. The modified survey was piloted with occupational therapists in Ireland (n = 8). These occupational therapists were asked to respond to an open-ended question about the survey content and design (e.g., clarity of the questions, timing, flow of the survey). Qualitative responses indicated that participants were satisfied with both the content and design of the survey and no further changes were made.
Procedures Ethical considerations The study adhered to standard research ethical principles as outlined in the Declaration of Helsinki (Goodyear, Krleza-Jeric & Lemmens, 2007). Following local procedures set out by the Research Ethics Committee at the National University of Ireland, Galway formal ethical approval for the study was not sought. Instead, the study was reviewed by an internal research ethics advisory group at the Discipline of Occupational Therapy. All questionnaires were completed anonymously. Potential participants were advised that consent to participate in the study was assumed by their voluntary completion of the questionnaire.
Data analysis Quantitative data were entered into PAWS Statistics Version 18 for Mac (SPSS Inc., Chicago, IL, USA). Descriptive statistics were generated to develop an overall picture of occupational therapy practice relating to people with dementia and their carers. Answers to open-ended questions were transcribed and analysed using descriptive content analysis. The second author reviewed each response and sorted the responses into categories based on similarities and differences. A summary list of categories was then prepared. The first author reviewed the summary list of categories and where disagreements occurred these disagreements were resolved through discussion between both authors. A final list of categories was thus generated by both authors.
Results Forty-seven occupational therapists completed the survey. Based on the initial recruitment of participants this represents a 75.8% response rate. However, as the final number of participants who were invited to participate in the survey is not known this may not represent an
accurate response rate. In addition, due to the anonymous nature of the survey no information was available to the researchers regarding non-responders to the survey.
Participants’ demographic and practice characteristics Table 1 provides full details of respondents’ demographic and practice characteristics. Most of the respondents worked in primary and community care (41.5%, n = 19) and had between two and five years of experience in dementia care (44.7%, n = 21). Only one respondent (2.1%) worked full-time in dementia care and the majority of respondents had not received specialist training in dementia care (59.6%, n = 28). Two thirds of respondents (66%, n = 31) mostly worked simultaneously with the person with dementia and their carer while just over one third (34%, n = 16) worked primarily with the person who had dementia alone. The majority of participants (40.4%, n = 19) worked primarily with people who had early stage or mild dementia. Most participants (59.6%, n = 28) worked with between zero and five people with dementia and their carers each week with the majority (74.4%, n = 35) providing between two and five interventions per person.
Assessment practices Information was sought relating to participants’ three most frequently used clinical assessments. Participants reported using a broad range of assessments, including both standardised and non-standardised assessments. For the purposes of reporting, assessments were grouped into their primary focus (e.g. cognitive assessment, functional assessment, environmental assessment). Table 2 provides details of participants’ assessment practices. Cognitive assessments accounted for 54.6% of the three most frequent assessment types used by respondents. Within this category of assessment, 41% (n = 31) of respondents reported using the Mini Mental State Examination (Folstein, Folstein & McHugh, 1975) most frequently. The Middlesex Elderly Assessment of Mental State (Golding, 1989) and the Addenbrooke’s Cognitive Examination – Revised (Mioshi, Dawson, Mitchell, Arnold & Hodges, 2006) were each both used most frequently by 14.6% (n = 11) of participants. Functional assessments accounted for a further 24% of the most frequently used assessments by respondents. Of participants who reported to frequently use functional assessment, the majority (n = 22, 64.7%) used a non-standardised functional assessment. When standardised assessments were used by participants the Assessment of Motor and Process Skills (Fisher, 2006) was used most frequently (n = 4, 11.7%) followed by the Functional Independence Measure (Granger, Hamilton, Keith, Zielesny & Sherwin, 1986) (n = 3, 8.8%). © 2013 Occupational Therapy Australia
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TABLE 1: Participants’ demographic and practice characteristics (N = 47)
TABLE 1: (Continued) n n
Gender Female 44 93.6 Male 3 6.4 Highest academic qualification in occupational therapy Diploma 6 12.8 Bachelor 32 68.1 Postgraduate coursework 4 8.5 Postgraduate research 4 8.5 Other 1 2.1 Primary practice setting Hospital 13 27.6 Rehabilitation service 4 8.5 Primary and community care services 19 41.5 Private practice 1 2.1 Nursing home 7 14.9 Mixed 3 6.4 Number of years of working as an occupational therapist < 1 year 0 0 1–4 years 13 27.7 > 5 years 34 72.3 Number of years clinical experience in dementia care 1 to < 2 8 17.0 2–5 21 44.7 >5 18 38.3 Specialist training in dementia care Yes 19 40.4 No 28 59.6 % of clinical caseload relating to people with dementia 1–10% 16 34.0 11–24% 13 27.7 25–49% 11 23.4 50–74% 6 12.8 75–100% 1 2.1 % of clinical caseload relating to carers of people with dementia 1–10% 31 66 11–24% 11 23.4 25–49% 3 6.4 50–74% 2 4.3 75–100% 0 0 Number of people with dementia/carers of people with dementia seen each week 0–5 28 59.6 6–10 12 25.5 11–20 3 6.4 21–50 4 8.5
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%
% Most frequent method of working with this client group Usually see the carer and person with 31 66 dementia together Usually see the person with 16 34 dementia alone Usually see the carer alone 0 0 Stage of dementia of the majority of people with dementia on caseload Pre-dementia 0 0 Early stage/mild dementia 19 40.4 Moderate dementia 15 31.9 Severe dementia 13 27.7
TABLE 2: Participants’ assessment practices (N = 141) Assessment type
n
%
Cognitive assessment Functional assessment Environmental assessment Carer assessment Seating/pressure care assessment Occupational participation Perceptual assessment Risk assessment Assistive technology Moving and handling assessment Missing responses
77 34 7 7 3 2 1 1 1 1 7
54.6 24.1 4.9 4.9 2.1 1.4 0.7 0.7 0.7 0.7 4.9
Each participant (n = 47) was asked to list his/her three most frequently used assessments giving a total of 141 responses.
Other categories of assessment frequently used were environmental assessment, carer assessment, seating and pressure care assessment and assessment of occupational participation.
Occupational therapy intervention Table 3 provides a list of 26 potential occupational therapy interventions for people with dementia together with the frequency which participants in this study reported using these interventions in daily practice. Over half of participants reported using environmental modification, provision of assistive devices, compensatory strategies for basic activities of daily living and referral to others often or most of the time. Interventions most frequently excluded from practice by participants were exercise/Tai Chi, controlled multisensory
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TABLE 3: Occupational therapy interventions used by participants (N = 47)
Never
Often/most of the time
Sometimes
Intervention
n
%
n
%
n
%
Environmental modification advice Prescription of assistive devices/equipment Referral to other services Strategies for basic ADLs Strategies to enhance memory Other Assisting clients choice and use of meaningful activities Functional mobility training Strategies for (I)ADLs Education about dementia Social activities Cognitive retraining Leisure activities Strategies for community activities Reminiscence therapy Reality orientation Driving cessation/transport options Behavioural approaches Perceptual retraining Stress management/relaxation training Creative media Rehabilitation for comorbidities Validation therapy Multisensory stimulation Outings Psycho-social support Exercise/tai chi/yoga
0 1 2 6 5 15 11 14 9 9 20 15 22 18 25 18 24 20 25 23 34 38 40 38 34 28 42
0 2.1 4.3 12.8 10.6 31.9 23.4 29.8 19.1 19.1 42.6 31.9 46.8 38.3 53.2 38.3 51.1 42.6 53.2 48.9 72.3 80.9 85.1 80.9 72.3 59.6 89.4
12 13 18 17 22 13 17 16 21 21 16 22 15 19 12 21 17 21 17 19 10 4 3 6 10 17 5
25.5 27.7 38.3 36.2 46.8 27.7 36.2 34.0 44.7 44.7 34.0 46.8 31.9 40.4 25.5 44.7 36.2 44.7 36.2 40.4 21.3 8.5 6.4 12.8 21.3 36.2 10.6
35 33 27 24 20 19 19 17 17 17 11 10 10 10 10 8 6 6 5 5 5 5 4 3 3 2 0
74.4 70.2 57.4 51.0 42.5 40.4 40.4 36.1 36.1 36.1 23.4 21.3 21.3 21.3 21.3 17.0 12.8 12.8 10.6 10.6 10.6 10.6 8.5 6.3 6.3 4.3 0
environment, validation therapy, creative media and outings.
Perceived barriers in the delivery of occupational therapy services Participants were provided with a list of 11 potential barriers in the delivery of occupational therapy services for people with dementia and were asked to identify the top three barriers that influenced their practice. The majority of participants (n = 42, 89.4%) identified lack of therapist time as the most frequently experienced barrier. There was greater diversity among participants relating to the second and third most frequently occurring barriers. In relation to the second most frequently encountered barrier, just over one quarter of participants (n = 12, 25.5%), identified the cost of occupational therapy as a barrier. A further 21.3% (n = 10) selected role restrictions imposed by the setting as a barrier, with the remaining 14.9% (n = 7) selecting lack of
knowledge and skills relating to dementia among staff as an impediment to practice. Just over one third of participants (n = 18, 38.3%) selected the ability to access therapy resources as the third most frequently encountered barrier, while other barriers identified included client length of stay in hospital (n = 7, 14.9%) and client behaviour (n = 7, 14.9%). Fifteen participants (31.9%), responded to an openended question seeking further information on barriers in the delivery of occupational therapy services. Analysis of these responses revealed two further categories of barriers; crisis management as a model of practice and inequity in service provision. Participants pointed towards a health-care system that was focussed on managing crises rather than proactively supporting people with dementia and their carers to maintain occupational participation. Participants noted that, “only most urgent needs are met” and that referrals to occupational therapy services were frequently made in response to crises © 2013 Occupational Therapy Australia
98 and high levels of carer stress. One participant suggested that in this way occupational therapy became a service of last resort which was called upon following a breakdown of the relationship between carer and care recipient, “[the] straw that breaks the camel’s back phenomeon”. Some participants also noted that a shortage of occupational therapists within the health-care system meant that services were poorly placed to meet the needs of the growing numbers of people with dementia. They reported that the availability of occupational therapy services for people with dementia and their carers was dependent on the location of the services and as as result, “Lack of community follow-up in some areas can be a problem”.
Participants’ research awareness and educational needs The majority of participants (53.2%, n = 25) described themselves as reasonably confident that their knowledge of current research practice relating to dementia and occupational therapy was up to date. At the same time 93.7% of participants (n = 44) reported that further training would be either quite useful or extremely useful. Fifteen participants responded to an open-ended question regarding potential training topics. Responses indicated that participants were primarily interested in learning more about occupational therapy interventions for people with dementia. The majority of respondents suggested that further training focussing on challenging behaviours and cognitive rehabilitation strategies would be useful. Two participants suggested that further training was needed in health promotion strategies for people dementia and in interventions for early stage dementia.
Discussion This study explored occupational therapy practice for people with dementia and their carers in an Irish context. Similar to the results reported by Bennett et al. (2011), while participants in this study were confident in their knowledge of research to support occupational therapy practice in dementia care, the majority had not received specialist education in dementia and felt that further education would enhance their practice. Although it is generally agreed that specialist care does not necessarily enhance outcomes for people with dementia and their carers (Challis et al., 2010), previous research among occupational therapists, indicates that provision of additional training may influence the ability of therapists to apply research evidence to practice (Van’t Leven et al., 2012) and may influence the outcomes of evidence-based interventions (Voigt-Radloff et al., 2011). A secondary aim of this study was to consider whether therapists’ assessments and intervention prac© 2013 Occupational Therapy Australia
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tices reflect available occupational therapy research in this area. In relation to assessment practices, therapists in this study reported broadly similar practice to that described by Bennett et al. (2011). Assessment of occupational participation was largely absent from participants’ practice, with the majority of therapists reporting assessments of performance components rather than actual occupational performance. This is of concern because, as Padilla (2011a) notes the primary aim of occupational therapy for people with dementia is the treatment of disability rather than amelioration of underlying disease processes. Practice guidelines from the American Occupational Therapy Association (Schaber, 2010) suggest that a key issue for occupational therapists is to develop an occupational profile of the individual with dementia prior to developing an analysis of occupational performance. Using this approach to evaluation may support therapists to retain a focus on occupational performance and participation. The majority of participants described using standardised cognitive screening tests as their most frequent form of assessment. Although cognitive screening tools are widely used to detect and monitor the progression of dementia, screening tests do not distinguish between causes of cognitive impairment nor do they necessarily predict functional performance (Cullen, O’Neill, Evans, Coen & Lawlor, 2007). For people with dementia, loss of ability to perform activities of daily living may be more relevant than numerical scores on cognitive assessment. Furthermore, for occupational therapists, longer, more in-depth assessment of cognitive performance may be more useful to facilitate therapists to understand patterns of cognitive impairment and to generate useful information for developing individualised cognitive rehabilitation programmes. Research suggests that cognitive rehabilitation can be effective for people with early stage Alzheimer’s disease. However, this research indicates the need for interventions that are responsive to the individual’s specific needs and context (De Vreese, Neri, Fioravanti, Belloi & Zanetti, 2001). Use of cognitive screening tests alone is unlikely to generate sufficient information to allow occupational therapists to develop such specialised cognitive rehabilitation programmes and therefore it may be more useful to consider more in-depth cognitive assessment, perhaps in collaboration with neuropsychological services so that the most effective strategies can be implemented. Information regarding a person’s ability to perform activities of daily living is an essential aspect of occupational therapy assessment and plays an important role in determining occupational therapy interventions. Assessment of functional performance is also important in making recommendations about future care settings, measuring the severity of dementia and determining carer needs. In this study, the majority of occupational therapists reported using non-standardised functional assessments. Due to the limitations of the survey,
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detailed information about the methods used to complete these assessments was not available. However, feedback received from participants indicates that most were using locally designed assessments which focussed on basic activities of daily living. The limited use of standardised assessments was unexpected, given the availability of standardised assessments of activities of daily living specifically designed for people with dementia (e.g., The Pool Activity Level Instrument for Occupational Profiling (Pool, 2011)). Use of standardised assessments is associated with increased objectivity, enhanced ability to discriminate results and ease of communication between health-care professionals (Fisher, 2006). However, as Bennett et al. (2011) note, choice of assessment is not always based solely on clinical utility but is likely to be influenced by usual practice and organisational demands. Although acknowledging the limitations that may be imposed by practice and organisational demands, we suggest that the current assessment practice of occupational therapists may be enhanced by careful consideration of the clinical utility of standardised assessments of activities of daily living. The most frequently used occupational therapy interventions relate to the World Health Organisation’s categories of promotion of physical health, cognitive functioning, activity and wellbeing and providing education and support for carers (World Health Organisation, 2012). Occupational therapists in this study rarely used interventions that sought to address behavioural or psychological symptoms of dementia or to improve functioning in people with mild cognitive impairment. This gap in practice may reflect current models of service provision for people with dementia in Ireland, with recent reports referring to lack of services and crisis models of service delivery (Begley, 2009; Cahill et al., 2012). Given the impact of mild cognitive impairment on occupational participation (Ohman, Nygard & Kottorp, 2011) and the high levels of behavioural and psychological symptoms experienced by people with dementia (Monastero et al., 2009), it is important that occupational therapists are supported to develop interventions in these areas. The interventions most frequently used by occupational therapists in this study – environmental modifications, provision of assistive technology and referral to other sources are supported by evidence of effectiveness (Dooley & Hinojosa, 2004; Gitlin et al., 2010; Graff et al., 2006, 2007; Padilla, 2011a,b). However, due to the nature of the survey the way in which these interventions were used is not fully clear. The majority of studies have found that use of environmental modifications and assistive technology is most effective when combined with carer interventions and follow-up support (Dooley & Hinojosa, 2004; Gitlin et al., 2010; Graff et al., 2007). In this study, most participants described working collaboratively with people with dementia and their carers.
99 However, they also describe having limited time to spend with each person. The required intensity and duration of occupational therapy interventions is not yet clear with various patterns being reported in the literature (Dooley & Hinojosa, 2004; Gitlin et al., 2010; Graff et al., 2007; McGrath & Passmore, 2009). However, the need for a follow-up to ensure that recommendations continue to meet the needs of people with dementia and their carers has been consistently highlighted. Participants in this study described being unable to provide follow-up interventions due to lack of time and gaps in community services. Thus, it may be important that future occupational therapy research focuses on exploring the impact of follow-up on patient outcomes to support the development of service in this area. Barriers to evidence-based practice occupational therapy for people with dementia described by participants are similar to those identified by occupational therapists in Australia (Bennett et al., 2011). The ability of therapists to apply research evidence to practice appears to be strongly constrained by practice and organisational demands e.g. limited numbers of occupational therapists, lack of availability of a comprehensive multidisciplinary team, lack of early referral of people with dementia to occupational therapy. These findings are not unique to occupational therapy and it is widely recognised that the implementation of evidence-based practice is challenging, particularly when such implementation requires changes in clinical care and organisation of services (Grol, Bosch, Hulscher, Eccles & Wensing, 2007; Lin, Murphy & Robinson, 2010). However, the findings do point to the need for the profession of occupational therapy to pay particular attention to the processes involved in translating research knowledge into evidence-based practice. The need for a global unified research strategy to advance the profession’s knowledge base has previously been identified (Lin et al.). However, we propose that a strategy for knowledge translation is equally important if occupational therapy is to continue to be reimbursed and recognised as a vital component of care for people with dementia. A number of strategies have been identified which may enhance knowledge translation in occupational therapy, including (i) involving all stakeholders who influence the design and delivery of services (i.e. clinicians, educators, managers, administrators and policy makers); (ii) establishing forums to share tacit knowledge; (iii) investing in education to support development of skills in retrieving and evaluating research evidence; (iv) advocating for dedicated time in the workplace to search for, evaluate and apply evidence; and (v) incorporating knowledge translation process models into every day occupational therapy practice (Lin et al.; Metzler & Metz, 2010). We suggest that adopting a global occupational therapy position on knowledge translation that incorporates these strategies may be helpful if the impact of existing research is to be maximised. © 2013 Occupational Therapy Australia
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Limitations Although this study provides a first account of occupational therapy practice relating to dementia care in Ireland, there are a number of study limitations which impact upon the extent to which the findings of the study can be generalised. First, due to the lack of a national register of occupational therapists this study adopted a convenience snowball sampling technique and as result it is not possible to provide an accurate account of the response rate to the survey. On the basis of our initial sampling, we calculated a reponse rate of 75.8% which meets acceptable minimum standards for survey-based reasearch (Borque & Fielder, 2003). However, given our sampling strategy, it is possible that the actual response rate was lower, thus increasing the potential for bias. To improve the response rate this study made use of participant reminders. However, due to the sampling strategy used the effectiveness of this approach cannot be determined. Second, as a result of the sampling strategy no information was gathered on non-responders to the survey. Thus, it is possible that non-responders may be systematically different to responders and results should be interpreted accordingly.
Conclusions Whereas there is a growing body of research to support occupational therapy practice in the field of dementia care this study highlights the need for substantial investment in occupational therapy services if the knowledge generated by research is to be translated to practice. The results of this study support earlier studies in Australia (Bennett et al., 2011) and The Netherlands (Van’t Leven et al., 2012) which have highlighted the challenges faced by clinical occupational therapists who wish to implement evidence-based practice in dementia care. Given the increased pressure faced by clinicians to ensure that their practice is both effective and efficient (Grol et al., 2007; Lin et al., 2010; Metzler & Metz, 2010), the development of a global occupational therapy strategy for knowledge translation in dementia care is urgently needed. Future research should focus on developing and evaluating interventions to support translation of existing occupational therapy research into occupational therapy practice for people with dementia.
References Alzheimer’s Disease International. (2010). World Alzheimer Report 2010 – The global economic impact of dementia. London: Alzheimer’s Disease International. Alzheimer’s Disease International. (2012). World Alzheimer Report 2012 – Overcoming the stigma of dementia. London: Alzheimer’s Disease International. Arbesman, M. & Lieberman, D. (2011). Methodology for the systematic reviews on occupational therapy for adults © 2013 Occupational Therapy Australia
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with Alzheimer’s disease and related dementias. American Journal of Occupational Therapy, 65, 490–496. Begley, E. (2009). I know what it is but how bad does it get? Insights into the lived experience and service needs of people with early stage dementia. PhD Unpublished Thesis. Dublin: Trinity College. Bennett, S., Shand, S. & Liddle, J. (2011). Occupational therapy practice in Australia with people with dementia: A profile in need of change. Australian Occupational Therapy Journal, 58, 155–163. Borque, L. & Fielder, E. P. (2003). How to conduct self-administered and mail surveys. London: SAGE Publications. Cahill, S., O’Shea, E. & Pierce, M. (2012). Creating excellence in dementia care: A research review for Ireland’s National dementia strategy. Dublin: DSIDC’s Living with Dementia Research Programme, School of Social Work and Social Policy, Trinity College, Dublin, Irish Centre for Social Gerontology, National University of Ireland, Galway. Challis, D., Clarkson, P., Hughes, J., Chester, H., Davies, S., Sutcliffe, C. et al. (2010). Community support services for people with dementia: The relative costs and benefits of specialist and generic domiciliary care services. Manchester: Personal Social Services Research Unit at the University of Manchester. Chard, G., Liu, L. & Mulholland, S. (2009). Verbal cueing and environmental modifications: Strategies to increase engagement in occupations in persons with Alzheimer disease. Physical & Occupational Therapy in Geriatrics, 27, 197–211. Connolly, S., Gillespie, P., O’Shea, E., Cahill, S. & Pierce, M. (2012). Estimating the economic and social costs of dementia in Ireland. Demetia, doi: 10.1177/14713012 12442453 Cullen, B., O’Neill, B., Evans, J. J., Coen, R. F. & Lawlor, B. A. (2007). A review of screening tests for cognitive impairment. Journal of Neurology, Neurosurgery and Psychiatry, 78, 790–799. De Vreese, L. P., Neri, M., Fioravanti, M., Belloi, L. & Zanetti, O. (2001). Memory rehabilitation in Alzheimer’s disease: A review of Progress. International Journal of Geriatric Psychiatry, 16, 794–809. Dooley, N. R. & Hinojosa, J. (2004). Improving quality of life for persons with alzheimer’s disease and their family caregivers: Brief occupational therapy intervention. American Journal of Occupational Therapy, 58, 561–569. Fisher, A. G. (2006). Assessment of motor and process skills: Vol. 1. Development, standardization, and administration manual (6th ed.). Fort Collins, CO: Three Star Press. Folstein, M. F., Folstein, S. E. & McHugh, P. R. (1975). “Mini-mental state”. A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189–198. Gitlin, L. N., Hauck, W. W., Dennis, M. P. & Winter, L. (2005). Maintenance of effects of the home environmental skill-building program for family caregivers and individuals with Alzheimer’s disease and related disorders. Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 60, 368–374. Gitlin, L. N., Winter, L., Dennis, M. P., Hodgson, N. & Hauck, W. W. (2010). A biobehavioral home-based inter-
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vention and the well-being of patients with dementia and their caregivers: The COPE randomized trial. Journal of the American Medical Association, 304, 983–991. Golding, E. (1989). Middlesex elderly assessment of mental State. Bury St Edmunds: Thames Valley Test Company. Goodyear, M. D., Krleza-Jeric, K. & Lemmens, T. (2007). The declaration of Helsinki. British Medical Journal, 335, 624–625. Graff, M. J., Vernooij-Dassen, M. J., Thijssen, M., Dekker, J., Hoefnagels, W. H. & Olderikkert, M. G. (2006). Community based occupational therapy for patients with dementia and their care givers: Randomised controlled trial. British Medical Journal, 333, 1196. Graff, M. J., Vernooij-Dassen, M. J., Thijssen, M., Dekker, J., Hoefnagels, W. H. & Olderikkert, M. G. (2007). Effects of community occupational therapy on quality of life, mood, and health status in dementia patients and their caregivers: A randomized controlled trial. Journals of Gerontology. Series A, Biological Sciences and Medical Sciences, 62, 1002–1009. Granger, C. V., Hamilton, B. B., Keith, R. A., Zielesny, M. & Sherwin, F. S. (1986). Advances in functional assessment for medical rehabilitation. Topics in Geriatric Rehabilitation, 1, 59–74. Grol, R. P., Bosch, M. C., Hulscher, M. E., Eccles, M. P. & Wensing, M. (2007). Planning and studying improvement in patient care: The use of theoretical perspectives. Milbank Quarterly, 85, 93–138. Lin, S. H., Murphy, S. L. & Robinson, J. C. (2010). Facilitating evidence-based practice: Process, strategies, and resources. American Journal of Occupational Therapy, 64, 164–171. McGrath, M. & Passmore, P. (2009). Home-based memory rehabilitation programme for persons with mild dementia. Irish Journal of Medical Science, 178 (Suppl. 8), S330. Metzler, M. J. & Metz, G. A. (2010). Translating knowledge to practice: An occupational therapy perspective. Journal of Alzheimer’s Disease, 57, 373–379. Mioshi, E., Dawson, K., Mitchell, J., Arnold, R. & Hodges, J. R. (2006). The Addenbrooke’s cognitive examination revised (ACE-R): A brief cognitive test battery for dementia screening. International Journal of Geriatric Psychiatry, 21, 1078–1085. Monastero, R., Mangialasche, F., Camarda, C., Ercolani, S. & Camarda, R. (2009). A systematic review of neuropsychiatric symptoms in mild cognitive impairment. Journal of Alzheimer’s Disease, 18, 11–30.
101 Ng, S., Lo, A., Lee, G., Lam, M., Yeong, E., Koo, M. et al. (2006). Report of the outcomes of occupational therapy programmes for elderly persons with mild cognitive impairment (MCI) in community elderly centres. Hong Kong Journal of Occupational Therapy, 16, 16–22. Ohman, A., Nygard, L. & Kottorp, A. (2011). Occupational performance and awareness of disability in mild cognitive impairment or dementia. Scandinavian Journal of Occupational Therapy, 18, 133–142. Padilla, R. (2011a). Effectiveness of interventions designed to modify the activity demands of the occupations of self-care and leisure for people with Alzheimer’s disease and related dementias. American Journal of Occupational Therapy, 65, 523–531. Padilla, R. (2011b). Effectiveness of environment-based interventions for people with alzheimer’s disease and related dementias. American Journal of Occupational Therapy, 65, 514–522. Petersen, R. C., Stevens, J. C., Ganguli, M., Tangalos, E. G., Cummings, J. L. & DeKosky, S. T. (2001). Practice parameter: Early detection of dementia: Mild cognitive impairment (an evidence-based review). Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology, 56, 1133–1142. Pool, J. (2011). The pool activity level (PAL) instrument for occupational profiling (4th ed.). London: Jessica Kingsley Publishers. Schaber, P. (2010). Occupational therapy practice guidelines for adults with Alzheimer’s disease and related disorders. Bethesda, MD: American Occupational Therapy Association, Inc. Van’t Leven, N., Graff, M. J., Kaijen, M., de Swart, B. J., Olde Rikkert, M. G. & Vernooij-Dassen, M. J. (2012). Barriers to and facilitators for the use of an evidence-based occupational therapy guideline for older people with dementia and their carers. International Journal of Geriatric Psychiatry, 27, 742–748. Voigt-Radloff, S., Graff, M., Leonhart, R., H€ ull, M., Rikkert, M. O. & Vernooij-Dassen, M. (2011). Why did an effective Dutch complex psycho-social intervention for people with dementia not work in the German healthcare context? Lessons learnt from a process evaluation alongside a multicentre RCT. BMJ Open, 1, e000094. World Health Organisation. (2012). Dementia: A public health priority. Geneva: World Health Organisation.
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doi: 10.1111/1440-1630.12081
Research Article
Occupational therapy and dementia care: A survey of practice in the Republic of Ireland Margaret McGrath and Claire O’Callaghan School of Health Sciences, College of Medicine, Nursing and Health Sciences, National University of Ireland, Galway, Ireland
Background/aim: There is a growing body of research to support the role of occupational therapy in dementia care. However, little is known about the extent to which this research is translated into occupational therapy practice. This study addresses this gap by considering current occupational therapy practice in the field of dementia care in Ireland. Methods: A cross-sectional online survey was used to gather data about current practice. Convenience sampling and snowball recruitment techniques were used to recruit occupational therapists. Data were analysed using a combination of descriptive statistics and content analysis. Results: Forty-seven therapists responded to the survey. The majority of respondents worked in primary care and provided services for people with early stage or mild dementia. Assessment practices were primarily focussed on cognitive screening and functional performance. Limited attention was paid to occupational participation. Interventions typically addressed environmental modification, assistive devices and compensatory strategies. The ability of therapists to apply research evidence to practice appears to be strongly constrained by practice and organisational demands. Conclusion: There is a need for a global occupational therapy strategy to support knowledge translation in dementia care. At present although occupational therapists are aware of research evidence they face significant barriers in applying this evidence in practice.
Introduction
KEY WORDS ageing, assessment, cross-sectional survey, dementia, evidence based practice, intervention.
Occupational therapy has a significant role to play in dementia care (Arbesman & Lieberman, 2011) and there is a growing body of empirical research to support the use of occupational therapy interventions in many of the key areas of practice identified by the World Health Organisation (2012). Research evidence supporting occupational therapy practice in each of these areas will now be reviewed before considering the extent to which this evidence is translated into every day practice.
Margaret McGrath MSc, BSc (Hons) Cur.Occ., PGDip (Academic Practice); Lecturer in Occupational Therapy. Claire O’Callaghan BSc (OT); Occupational Therapist. Correspondence: Margaret McGrath, Discipline of Occupa tional Therapy, School of Health Sciences, Aras Moyola, National University of Ireland, Galway, Newcastle Road, Galway, Ireland. Email: [email protected] Accepted for publication 27 July 2013. © 2013 Occupational Therapy Australia
As a result of global ageing the incidence of dementia is set to increase rapidly in the next few decades. In 2010, there were approximately 35.6 million people in the world living with dementia and population estimates indicate that this number will increase to 115.4 million in 2050 (Alzheimer’s Disease International, 2010). Accounting for 11.9% of years lived with a disability due to a non-communicable disease (World Health Organisation, 2012), dementia is the leading cause of disability among older people throughout the world (World Health Organisation). The worldwide cost of dementia was estimated to be approximately US$604 billion in 2010 and the majority (42%) of these costs were related to the provision of social care by professionals and informal unpaid care by families and others (Alzheimer’s Disease International). Despite the increasing prevalence of dementia, and the significant consequences of dementia for both individuals and communities, most countries are unprepared to respond to the needs of people with dementia and their carers (World Health Organisation). The World Health Organisation suggests that multidisciplinary, intersectoral approaches to dementia care are needed and should focus on (i) ensuring early diagnosis; (ii) promoting physical health, cognitive functioning, activity and wellbeing; (iii) detecting and managing behavioural and psychological symptoms; and (iv) providing education and support for carers.
Occupational therapy and dementia care
Early diagnosis Early detection and diagnosis of dementia can allow the individual with dementia to take an active role in plan-
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ning for the future and making decisions about care (Alzheimer’s Disease International, 2012). Although limited research was identified relating to occupational therapy input in the diagnosis process, there is a growing interest in the role for rehabilitation professionals in the long-term follow-up of patients following early detection of mild cognitive impairment (Alzheimer’s Disease International). Mild cognitive impairment is a clinical diagnosis described as a transitional phase between normal ageing and dementia. Persons with mild cognitive impairment have cognitive complaints and diminished occupational performance but do not meet the criteria for dementia. Follow-up studies demonstrate that up to 80% of people with mild cognitive impairment will convert to Alzheimer’s disease within six years (Petersen et al., 2001). Ng et al. (2006) using a quasi experimental design found that for people with mild cognitive impairment, group occupational therapy programmes, which emphasised an educational approach and incorporated adaptive strategies to handle memory impairments had a positive impact on participants’ cognitive performance, level of depression and overall symptoms of dementia. McGrath and Passmore (2009) found that a brief occupational therapy home-based rehabilitation programme (one home visit per week for a period of between five and six weeks) which emphasised compensatory strategies and environmental adaption was valued by people with early stage dementia and their care givers. At follow-up two years later, 50% of the participants continued to use the strategies provided by the occupational therapist.
Promoting physical health, cognitive functioning, activity and wellbeing Padilla (2011a), following a systematic review of the research literature, concluded that there was strong evidence to support the use of activity modification by occupational therapists to enable people with dementia to continue to participate in meaningful self-care and leisure activities. Gitlin, Winter, Dennis, Hodgson and Hauck (2010) found that for people with moderate stage dementia, a combination of occupational therapy (10 sessions over four months per person) and advanced nursing (one face to face session and one telephone session) resulted in lower levels of dependence in instrumental activities of daily living and increased engagement when compared with a control group who received three telephone calls and educational materials. Chard, Liu and Mulholland (2009) report that a combination of environmental modifications and carer training (between one and three hours of therapy per individual), increased performance of activities of daily living by people with dementia residing in assisted living facilities. Graff et al. (2006) found that community-based occupational therapy (10 one-hour sessions over a period of five weeks per per-
son), focussing on the use of compensatory and environmental strategies, increased performance of activities of daily living among people with mild to moderate dementia. Similarly Dooley and Hinojosa (2004) found that a brief occupational therapy intervention with individualised recommendations for carers resulted in significant improvement in quality of life for people with mild to moderate stage Alzheimer’s dementia.
Detecting and managing behavioural and psychological symptoms Psychological symptoms such as depression, anxiety, agitation, hallucinations and delusions impact approximately 80% of nursing home residents with dementia and over 50% of people with dementia who live in the community (Monastero, Mangialasche, Camarda, Ercolani & Camarda, 2009). The primary focus of occupational therapy interventions in this area has been on environmental modification and carer training and no occupational therapy interventions were identified that specifically focussed on behavioural management. Padilla (2011b) reviewed the use of environmental modifications to address behavioural and psychological symptoms of dementia and suggested that there is some evidence from research outside of occupational therapy that supports the use of environmental modification in reducing the incidence of wandering behaviours. However, Padilla also noted that existing research is limited and that the possibility of causing psychological distress to people with dementia by the introducion of environmental modifications has not yet been discounted.
Providing education and support for carers of people with dementia In a systematic review of occupational therapy for carers of people with Alzheimer’s disease, Arbesman and Lieberman (2011) noted that there is strong research evidence relating to the effectiveness of occupational therapy interventions which focus on providing education about Alzheimer’s disease for carers, problem-solving, task simplification, communication and basic home modification. Gitlin, Hauck, Dennis and Winter (2005) found that the Home Environmental Skill-building Program, which consisted of a combination of active treatment (five 90-minute home visits and one telephone call over a period of six months) and maintenance (one home visit and three telephone calls over a period of 12 months), resulted in carers reporting improved skills, perceiving less need for help in supporting people with dementia and fewer behavioural disturbances when compared with carers who did not receive this intervention. Graff et al. (2006) and Dooley and Hinojosa (2004) both found that providing individualised recommendations for carers resulted in a significant reduction in carer burden. © 2013 Occupational Therapy Australia
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Health-care services for people with dementia in Ireland Health and social care services for people with dementia in Ireland have been described as limited and disjointed (Connolly, Gillespie, O’Shea, Cahill & Pierce, 2012). The majority of people with dementia (63%) live in the community, with a further 34% living in longstay residential care (Connolly et al.). Formal care services are focussed on residential care provision either in public (state funded) or private (for-profit) nursing homes. Family and friends typically provide services for people with dementia who remain living in the community on a voluntary (unpaid) basis (Connolly et al.). Rehabilitation services are provided through acute hospital services, primary care services and in some instances are available in public nursing homes. However, access to such services has been limited (Cahill, O’Shea & Pierce, 2012). In relation to occupational therapy in 2009 Begley (as cited by Cahill et al.) suggested that the lack of occupational therapy services utilised by people with dementia living in the community, may be due to the lack of occupational therapy services available and lengthy delays in accessing existing services. The levels of access to occupational therapy by people with dementia and their carers within acute hospital and public nursing homes is not known.
Translating occupational therapy research evidence into practice Although there is a significant body of research evidence to support occupational therapy practice in each of the key areas of dementia care the extent to which this evidence is used in daily practice is not clear. Only two published studies were identified which considered occupational therapy practice patterns in dementia care. A national study of occupational therapy practice for people with dementia in Australia found that occupational therapists faced significant challenges in implementing evidence-based practice for this group (Bennett, Shand & Liddle, 2011). The main barriers to implementing evidence-based practice were lack of time and practice setting constraints. Similar difficulties were reported by Van’t Leven et al. (2012) who explored barriers and facilitators to implementing an evidence-based occupational therapy programme guideline by a small sample of Dutch occupational therapists. In addition to time constraints, participants in this study also reported a lack of confidence in their ability to treat people with dementia in the home environment (Van’t Leven et al.). Given the relevance of occupational therapy for people with dementia it is important to investigate occupational therapy practice in this area and to consider factors that may support or impede the translation of research into practice. Such information is relevant both at a national level for the development of occupational therapy services and at international level to support
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ongoing efforts at knowledge translation in occupational therapy. This study contributes to this work by exploring occupational therapy assessment and intervention practices for people with dementia in Ireland.
Methods Design This study used a cross-sectional survey design to gather information from occupational therapists working with people with dementia and their carers. An Internet-based survey was chosen over a postal survey as Internet surveys are associated with higher rates of participation when targeting professional groups (Borque & Fielder, 2003). The survey was uploaded to an Internet survey site and participants were provided with a link to the site via an email invitation.
Participants The sample for the study was chosen using non-probability convenience sampling. Participants were eligible for inclusion in the study if they were working in Ireland as an occupational therapist with people with dementia or carers of people with dementia. We sought to include occupational therapists working with both the statutory and voluntary services and attempted to recruit participants from a wide variety of clinical settings (e.g. hospital, community, respite services and nursing home care). As there is currently no national register for occupational therapists working in Ireland, participants were recruited from a list of occupational therapists compiled from information from professional bodies, the telephone directory and senior managers in the health sector. An invitation email was sent to potential participants (n = 62) outlining the aims and objectives of the study together with a link to the online questionnaire. Snowball sampling methods were also used with all emails inviting recipients to send the invitation to participate in the study to colleagues.
Measure Data for the study were gathered using an adapted version of a survey of practice patterns of occupational therapists in Australia working with people with dementia (Bennett et al., 2011). This questionnaire is made up of five sections designed to gather information about participants’ (i) clinical setting and referral patterns; (ii) assessment and intervention practices; (iii) perceived barriers in the delivery of occupational therapy services; (iv) knowledge and educational needs relating to dementia care; and (v) demographic characteristics. Data were gathered using a combination of fixed response category options and open-ended questions. Fixed response category options were used to gather information about participants’ demographic and clinical practice characterisitics, while open-ended ques-
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tions were used to generate understanding of clinical reasoning, and percieved barriers and facilitators to practice. To increase the relevance of the survey to this study permission was sought and obtained from the authors to adapt the original survey so that it reflected the Irish context. Thus, questions relating to geographical areas of practice were changed. No other modifications were made to the survey. The modified survey was piloted with occupational therapists in Ireland (n = 8). These occupational therapists were asked to respond to an open-ended question about the survey content and design (e.g., clarity of the questions, timing, flow of the survey). Qualitative responses indicated that participants were satisfied with both the content and design of the survey and no further changes were made.
Procedures Ethical considerations The study adhered to standard research ethical principles as outlined in the Declaration of Helsinki (Goodyear, Krleza-Jeric & Lemmens, 2007). Following local procedures set out by the Research Ethics Committee at the National University of Ireland, Galway formal ethical approval for the study was not sought. Instead, the study was reviewed by an internal research ethics advisory group at the Discipline of Occupational Therapy. All questionnaires were completed anonymously. Potential participants were advised that consent to participate in the study was assumed by their voluntary completion of the questionnaire.
Data analysis Quantitative data were entered into PAWS Statistics Version 18 for Mac (SPSS Inc., Chicago, IL, USA). Descriptive statistics were generated to develop an overall picture of occupational therapy practice relating to people with dementia and their carers. Answers to open-ended questions were transcribed and analysed using descriptive content analysis. The second author reviewed each response and sorted the responses into categories based on similarities and differences. A summary list of categories was then prepared. The first author reviewed the summary list of categories and where disagreements occurred these disagreements were resolved through discussion between both authors. A final list of categories was thus generated by both authors.
Results Forty-seven occupational therapists completed the survey. Based on the initial recruitment of participants this represents a 75.8% response rate. However, as the final number of participants who were invited to participate in the survey is not known this may not represent an
accurate response rate. In addition, due to the anonymous nature of the survey no information was available to the researchers regarding non-responders to the survey.
Participants’ demographic and practice characteristics Table 1 provides full details of respondents’ demographic and practice characteristics. Most of the respondents worked in primary and community care (41.5%, n = 19) and had between two and five years of experience in dementia care (44.7%, n = 21). Only one respondent (2.1%) worked full-time in dementia care and the majority of respondents had not received specialist training in dementia care (59.6%, n = 28). Two thirds of respondents (66%, n = 31) mostly worked simultaneously with the person with dementia and their carer while just over one third (34%, n = 16) worked primarily with the person who had dementia alone. The majority of participants (40.4%, n = 19) worked primarily with people who had early stage or mild dementia. Most participants (59.6%, n = 28) worked with between zero and five people with dementia and their carers each week with the majority (74.4%, n = 35) providing between two and five interventions per person.
Assessment practices Information was sought relating to participants’ three most frequently used clinical assessments. Participants reported using a broad range of assessments, including both standardised and non-standardised assessments. For the purposes of reporting, assessments were grouped into their primary focus (e.g. cognitive assessment, functional assessment, environmental assessment). Table 2 provides details of participants’ assessment practices. Cognitive assessments accounted for 54.6% of the three most frequent assessment types used by respondents. Within this category of assessment, 41% (n = 31) of respondents reported using the Mini Mental State Examination (Folstein, Folstein & McHugh, 1975) most frequently. The Middlesex Elderly Assessment of Mental State (Golding, 1989) and the Addenbrooke’s Cognitive Examination – Revised (Mioshi, Dawson, Mitchell, Arnold & Hodges, 2006) were each both used most frequently by 14.6% (n = 11) of participants. Functional assessments accounted for a further 24% of the most frequently used assessments by respondents. Of participants who reported to frequently use functional assessment, the majority (n = 22, 64.7%) used a non-standardised functional assessment. When standardised assessments were used by participants the Assessment of Motor and Process Skills (Fisher, 2006) was used most frequently (n = 4, 11.7%) followed by the Functional Independence Measure (Granger, Hamilton, Keith, Zielesny & Sherwin, 1986) (n = 3, 8.8%). © 2013 Occupational Therapy Australia
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TABLE 1: Participants’ demographic and practice characteristics (N = 47)
TABLE 1: (Continued) n n
Gender Female 44 93.6 Male 3 6.4 Highest academic qualification in occupational therapy Diploma 6 12.8 Bachelor 32 68.1 Postgraduate coursework 4 8.5 Postgraduate research 4 8.5 Other 1 2.1 Primary practice setting Hospital 13 27.6 Rehabilitation service 4 8.5 Primary and community care services 19 41.5 Private practice 1 2.1 Nursing home 7 14.9 Mixed 3 6.4 Number of years of working as an occupational therapist < 1 year 0 0 1–4 years 13 27.7 > 5 years 34 72.3 Number of years clinical experience in dementia care 1 to < 2 8 17.0 2–5 21 44.7 >5 18 38.3 Specialist training in dementia care Yes 19 40.4 No 28 59.6 % of clinical caseload relating to people with dementia 1–10% 16 34.0 11–24% 13 27.7 25–49% 11 23.4 50–74% 6 12.8 75–100% 1 2.1 % of clinical caseload relating to carers of people with dementia 1–10% 31 66 11–24% 11 23.4 25–49% 3 6.4 50–74% 2 4.3 75–100% 0 0 Number of people with dementia/carers of people with dementia seen each week 0–5 28 59.6 6–10 12 25.5 11–20 3 6.4 21–50 4 8.5
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%
% Most frequent method of working with this client group Usually see the carer and person with 31 66 dementia together Usually see the person with 16 34 dementia alone Usually see the carer alone 0 0 Stage of dementia of the majority of people with dementia on caseload Pre-dementia 0 0 Early stage/mild dementia 19 40.4 Moderate dementia 15 31.9 Severe dementia 13 27.7
TABLE 2: Participants’ assessment practices (N = 141) Assessment type
n
%
Cognitive assessment Functional assessment Environmental assessment Carer assessment Seating/pressure care assessment Occupational participation Perceptual assessment Risk assessment Assistive technology Moving and handling assessment Missing responses
77 34 7 7 3 2 1 1 1 1 7
54.6 24.1 4.9 4.9 2.1 1.4 0.7 0.7 0.7 0.7 4.9
Each participant (n = 47) was asked to list his/her three most frequently used assessments giving a total of 141 responses.
Other categories of assessment frequently used were environmental assessment, carer assessment, seating and pressure care assessment and assessment of occupational participation.
Occupational therapy intervention Table 3 provides a list of 26 potential occupational therapy interventions for people with dementia together with the frequency which participants in this study reported using these interventions in daily practice. Over half of participants reported using environmental modification, provision of assistive devices, compensatory strategies for basic activities of daily living and referral to others often or most of the time. Interventions most frequently excluded from practice by participants were exercise/Tai Chi, controlled multisensory
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TABLE 3: Occupational therapy interventions used by participants (N = 47)
Never
Often/most of the time
Sometimes
Intervention
n
%
n
%
n
%
Environmental modification advice Prescription of assistive devices/equipment Referral to other services Strategies for basic ADLs Strategies to enhance memory Other Assisting clients choice and use of meaningful activities Functional mobility training Strategies for (I)ADLs Education about dementia Social activities Cognitive retraining Leisure activities Strategies for community activities Reminiscence therapy Reality orientation Driving cessation/transport options Behavioural approaches Perceptual retraining Stress management/relaxation training Creative media Rehabilitation for comorbidities Validation therapy Multisensory stimulation Outings Psycho-social support Exercise/tai chi/yoga
0 1 2 6 5 15 11 14 9 9 20 15 22 18 25 18 24 20 25 23 34 38 40 38 34 28 42
0 2.1 4.3 12.8 10.6 31.9 23.4 29.8 19.1 19.1 42.6 31.9 46.8 38.3 53.2 38.3 51.1 42.6 53.2 48.9 72.3 80.9 85.1 80.9 72.3 59.6 89.4
12 13 18 17 22 13 17 16 21 21 16 22 15 19 12 21 17 21 17 19 10 4 3 6 10 17 5
25.5 27.7 38.3 36.2 46.8 27.7 36.2 34.0 44.7 44.7 34.0 46.8 31.9 40.4 25.5 44.7 36.2 44.7 36.2 40.4 21.3 8.5 6.4 12.8 21.3 36.2 10.6
35 33 27 24 20 19 19 17 17 17 11 10 10 10 10 8 6 6 5 5 5 5 4 3 3 2 0
74.4 70.2 57.4 51.0 42.5 40.4 40.4 36.1 36.1 36.1 23.4 21.3 21.3 21.3 21.3 17.0 12.8 12.8 10.6 10.6 10.6 10.6 8.5 6.3 6.3 4.3 0
environment, validation therapy, creative media and outings.
Perceived barriers in the delivery of occupational therapy services Participants were provided with a list of 11 potential barriers in the delivery of occupational therapy services for people with dementia and were asked to identify the top three barriers that influenced their practice. The majority of participants (n = 42, 89.4%) identified lack of therapist time as the most frequently experienced barrier. There was greater diversity among participants relating to the second and third most frequently occurring barriers. In relation to the second most frequently encountered barrier, just over one quarter of participants (n = 12, 25.5%), identified the cost of occupational therapy as a barrier. A further 21.3% (n = 10) selected role restrictions imposed by the setting as a barrier, with the remaining 14.9% (n = 7) selecting lack of
knowledge and skills relating to dementia among staff as an impediment to practice. Just over one third of participants (n = 18, 38.3%) selected the ability to access therapy resources as the third most frequently encountered barrier, while other barriers identified included client length of stay in hospital (n = 7, 14.9%) and client behaviour (n = 7, 14.9%). Fifteen participants (31.9%), responded to an openended question seeking further information on barriers in the delivery of occupational therapy services. Analysis of these responses revealed two further categories of barriers; crisis management as a model of practice and inequity in service provision. Participants pointed towards a health-care system that was focussed on managing crises rather than proactively supporting people with dementia and their carers to maintain occupational participation. Participants noted that, “only most urgent needs are met” and that referrals to occupational therapy services were frequently made in response to crises © 2013 Occupational Therapy Australia
98 and high levels of carer stress. One participant suggested that in this way occupational therapy became a service of last resort which was called upon following a breakdown of the relationship between carer and care recipient, “[the] straw that breaks the camel’s back phenomeon”. Some participants also noted that a shortage of occupational therapists within the health-care system meant that services were poorly placed to meet the needs of the growing numbers of people with dementia. They reported that the availability of occupational therapy services for people with dementia and their carers was dependent on the location of the services and as as result, “Lack of community follow-up in some areas can be a problem”.
Participants’ research awareness and educational needs The majority of participants (53.2%, n = 25) described themselves as reasonably confident that their knowledge of current research practice relating to dementia and occupational therapy was up to date. At the same time 93.7% of participants (n = 44) reported that further training would be either quite useful or extremely useful. Fifteen participants responded to an open-ended question regarding potential training topics. Responses indicated that participants were primarily interested in learning more about occupational therapy interventions for people with dementia. The majority of respondents suggested that further training focussing on challenging behaviours and cognitive rehabilitation strategies would be useful. Two participants suggested that further training was needed in health promotion strategies for people dementia and in interventions for early stage dementia.
Discussion This study explored occupational therapy practice for people with dementia and their carers in an Irish context. Similar to the results reported by Bennett et al. (2011), while participants in this study were confident in their knowledge of research to support occupational therapy practice in dementia care, the majority had not received specialist education in dementia and felt that further education would enhance their practice. Although it is generally agreed that specialist care does not necessarily enhance outcomes for people with dementia and their carers (Challis et al., 2010), previous research among occupational therapists, indicates that provision of additional training may influence the ability of therapists to apply research evidence to practice (Van’t Leven et al., 2012) and may influence the outcomes of evidence-based interventions (Voigt-Radloff et al., 2011). A secondary aim of this study was to consider whether therapists’ assessments and intervention prac© 2013 Occupational Therapy Australia
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tices reflect available occupational therapy research in this area. In relation to assessment practices, therapists in this study reported broadly similar practice to that described by Bennett et al. (2011). Assessment of occupational participation was largely absent from participants’ practice, with the majority of therapists reporting assessments of performance components rather than actual occupational performance. This is of concern because, as Padilla (2011a) notes the primary aim of occupational therapy for people with dementia is the treatment of disability rather than amelioration of underlying disease processes. Practice guidelines from the American Occupational Therapy Association (Schaber, 2010) suggest that a key issue for occupational therapists is to develop an occupational profile of the individual with dementia prior to developing an analysis of occupational performance. Using this approach to evaluation may support therapists to retain a focus on occupational performance and participation. The majority of participants described using standardised cognitive screening tests as their most frequent form of assessment. Although cognitive screening tools are widely used to detect and monitor the progression of dementia, screening tests do not distinguish between causes of cognitive impairment nor do they necessarily predict functional performance (Cullen, O’Neill, Evans, Coen & Lawlor, 2007). For people with dementia, loss of ability to perform activities of daily living may be more relevant than numerical scores on cognitive assessment. Furthermore, for occupational therapists, longer, more in-depth assessment of cognitive performance may be more useful to facilitate therapists to understand patterns of cognitive impairment and to generate useful information for developing individualised cognitive rehabilitation programmes. Research suggests that cognitive rehabilitation can be effective for people with early stage Alzheimer’s disease. However, this research indicates the need for interventions that are responsive to the individual’s specific needs and context (De Vreese, Neri, Fioravanti, Belloi & Zanetti, 2001). Use of cognitive screening tests alone is unlikely to generate sufficient information to allow occupational therapists to develop such specialised cognitive rehabilitation programmes and therefore it may be more useful to consider more in-depth cognitive assessment, perhaps in collaboration with neuropsychological services so that the most effective strategies can be implemented. Information regarding a person’s ability to perform activities of daily living is an essential aspect of occupational therapy assessment and plays an important role in determining occupational therapy interventions. Assessment of functional performance is also important in making recommendations about future care settings, measuring the severity of dementia and determining carer needs. In this study, the majority of occupational therapists reported using non-standardised functional assessments. Due to the limitations of the survey,
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detailed information about the methods used to complete these assessments was not available. However, feedback received from participants indicates that most were using locally designed assessments which focussed on basic activities of daily living. The limited use of standardised assessments was unexpected, given the availability of standardised assessments of activities of daily living specifically designed for people with dementia (e.g., The Pool Activity Level Instrument for Occupational Profiling (Pool, 2011)). Use of standardised assessments is associated with increased objectivity, enhanced ability to discriminate results and ease of communication between health-care professionals (Fisher, 2006). However, as Bennett et al. (2011) note, choice of assessment is not always based solely on clinical utility but is likely to be influenced by usual practice and organisational demands. Although acknowledging the limitations that may be imposed by practice and organisational demands, we suggest that the current assessment practice of occupational therapists may be enhanced by careful consideration of the clinical utility of standardised assessments of activities of daily living. The most frequently used occupational therapy interventions relate to the World Health Organisation’s categories of promotion of physical health, cognitive functioning, activity and wellbeing and providing education and support for carers (World Health Organisation, 2012). Occupational therapists in this study rarely used interventions that sought to address behavioural or psychological symptoms of dementia or to improve functioning in people with mild cognitive impairment. This gap in practice may reflect current models of service provision for people with dementia in Ireland, with recent reports referring to lack of services and crisis models of service delivery (Begley, 2009; Cahill et al., 2012). Given the impact of mild cognitive impairment on occupational participation (Ohman, Nygard & Kottorp, 2011) and the high levels of behavioural and psychological symptoms experienced by people with dementia (Monastero et al., 2009), it is important that occupational therapists are supported to develop interventions in these areas. The interventions most frequently used by occupational therapists in this study – environmental modifications, provision of assistive technology and referral to other sources are supported by evidence of effectiveness (Dooley & Hinojosa, 2004; Gitlin et al., 2010; Graff et al., 2006, 2007; Padilla, 2011a,b). However, due to the nature of the survey the way in which these interventions were used is not fully clear. The majority of studies have found that use of environmental modifications and assistive technology is most effective when combined with carer interventions and follow-up support (Dooley & Hinojosa, 2004; Gitlin et al., 2010; Graff et al., 2007). In this study, most participants described working collaboratively with people with dementia and their carers.
99 However, they also describe having limited time to spend with each person. The required intensity and duration of occupational therapy interventions is not yet clear with various patterns being reported in the literature (Dooley & Hinojosa, 2004; Gitlin et al., 2010; Graff et al., 2007; McGrath & Passmore, 2009). However, the need for a follow-up to ensure that recommendations continue to meet the needs of people with dementia and their carers has been consistently highlighted. Participants in this study described being unable to provide follow-up interventions due to lack of time and gaps in community services. Thus, it may be important that future occupational therapy research focuses on exploring the impact of follow-up on patient outcomes to support the development of service in this area. Barriers to evidence-based practice occupational therapy for people with dementia described by participants are similar to those identified by occupational therapists in Australia (Bennett et al., 2011). The ability of therapists to apply research evidence to practice appears to be strongly constrained by practice and organisational demands e.g. limited numbers of occupational therapists, lack of availability of a comprehensive multidisciplinary team, lack of early referral of people with dementia to occupational therapy. These findings are not unique to occupational therapy and it is widely recognised that the implementation of evidence-based practice is challenging, particularly when such implementation requires changes in clinical care and organisation of services (Grol, Bosch, Hulscher, Eccles & Wensing, 2007; Lin, Murphy & Robinson, 2010). However, the findings do point to the need for the profession of occupational therapy to pay particular attention to the processes involved in translating research knowledge into evidence-based practice. The need for a global unified research strategy to advance the profession’s knowledge base has previously been identified (Lin et al.). However, we propose that a strategy for knowledge translation is equally important if occupational therapy is to continue to be reimbursed and recognised as a vital component of care for people with dementia. A number of strategies have been identified which may enhance knowledge translation in occupational therapy, including (i) involving all stakeholders who influence the design and delivery of services (i.e. clinicians, educators, managers, administrators and policy makers); (ii) establishing forums to share tacit knowledge; (iii) investing in education to support development of skills in retrieving and evaluating research evidence; (iv) advocating for dedicated time in the workplace to search for, evaluate and apply evidence; and (v) incorporating knowledge translation process models into every day occupational therapy practice (Lin et al.; Metzler & Metz, 2010). We suggest that adopting a global occupational therapy position on knowledge translation that incorporates these strategies may be helpful if the impact of existing research is to be maximised. © 2013 Occupational Therapy Australia
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Limitations Although this study provides a first account of occupational therapy practice relating to dementia care in Ireland, there are a number of study limitations which impact upon the extent to which the findings of the study can be generalised. First, due to the lack of a national register of occupational therapists this study adopted a convenience snowball sampling technique and as result it is not possible to provide an accurate account of the response rate to the survey. On the basis of our initial sampling, we calculated a reponse rate of 75.8% which meets acceptable minimum standards for survey-based reasearch (Borque & Fielder, 2003). However, given our sampling strategy, it is possible that the actual response rate was lower, thus increasing the potential for bias. To improve the response rate this study made use of participant reminders. However, due to the sampling strategy used the effectiveness of this approach cannot be determined. Second, as a result of the sampling strategy no information was gathered on non-responders to the survey. Thus, it is possible that non-responders may be systematically different to responders and results should be interpreted accordingly.
Conclusions Whereas there is a growing body of research to support occupational therapy practice in the field of dementia care this study highlights the need for substantial investment in occupational therapy services if the knowledge generated by research is to be translated to practice. The results of this study support earlier studies in Australia (Bennett et al., 2011) and The Netherlands (Van’t Leven et al., 2012) which have highlighted the challenges faced by clinical occupational therapists who wish to implement evidence-based practice in dementia care. Given the increased pressure faced by clinicians to ensure that their practice is both effective and efficient (Grol et al., 2007; Lin et al., 2010; Metzler & Metz, 2010), the development of a global occupational therapy strategy for knowledge translation in dementia care is urgently needed. Future research should focus on developing and evaluating interventions to support translation of existing occupational therapy research into occupational therapy practice for people with dementia.
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