JBI Database of Systematic Reviews & Implementation Reports
2015;13(3) 124 - 136
Sustaining adults with dementia or mild cognitive impairment in employment: a systematic review protocol of qualitative evidence David Robertson
1
Pamela Kirkpatrick Shona McCulloch
2
3
1 Institute of Health and Wellbeing Research and School of Health Sciences Robert Gordon University, Aberdeen, Scotland 2 Scottish Centre for Evidence-based Multi-professional Practice: a Collaborating Center of The Joanna Briggs Institute; Faculty of Health and Social Care, Robert Gordon University Aberdeen, Scotland 3 Adult Mental Health, Royal Cornhill Hospital, Aberdeen, Scotland
Corresponding author: David Robertson [email protected]
Review question/objective The aim of the systematic review is to identify and synthesize the best available qualitative evidence regarding the needs, experiences and perspectives of people with dementia or mild cognitive impairment who are either in employment or wish to gain employment and other significant stakeholders. This is a review of qualitative evidence as qualitative studies are known to be the most effective in elucidating needs, experiences and perspectives and may permit the reviewers to address the following questions: What are the needs, experiences and perceptions of people with dementia or mild cognitive impairment who are in employment or seeking employment? What are the needs, experiences and perceptions of people who care for, partner or otherwise informally support people with dementia or mild cognitive impairment who are in employment or seeking employment? What are the needs, experiences and perceptions of employers and co-workers of people with dementia or mild cognitive impairment? What are the needs, experiences and perceptions of employees of statutory health, social care and other governmental and voluntary agencies on the employment of people with dementia or mild cognitive impairment?
doi: 10.11124/jbisrir-2015-2033
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2015;13(3) 124 - 136
What are the needs, experiences and perspectives of people with dementia or mild cognitive impairment who are in employment or wish to gain employment and other significant stakeholders in regards to self and agency facilitated management strategies utilized to sustain people with dementia or mild cognitive impairment in employment? What are the needs, experiences and perspectives of people with dementia or mild cognitive impairment who are in employment or wish to gain employment and other significant stakeholders in regards to the factors that predict or facilitate the sustained employment of individuals with dementia or mild cognitive impairment? What are the needs, experiences and perspectives of people with dementia or mild cognitive impairment who are in employment or wish to gain employment and other significant stakeholders in regards to the factors that impede or preclude employment in individuals with dementia or mild cognitive impairment?
Background This review is focused on how people with dementia or a mild cognitive impairment who are employed, preparing for employment or who wish to gain employment might best be sustained in that employment. The impact of people with dementia or a mild cognitive impairment continuing to engage in productive remunerative employment is an emerging public health issue for the individual, their families or carers, employers, employment services and governmental agencies, and the safety of fellow employees, customers and members of the public. As an emerging public health problem, engagement in employment by younger people with dementia has attracted little attention from the research community worldwide. While epidemiological projections vary slightly, it is thought that dementia will increasingly affect low and middle income countries. The incidence and prevalence of dementia is increasing, and it is anticipated that 115 million people will be affected worldwide by the year 2050.
1,2
2
The incidence of dementia is estimated to double every 20 years. In the UK the
prevalence of dementia is predicted to double in the next 40 years (Alzheimer’s Society 2014) 1,3
and more than triple worldwide in the next 50 years (World Health Organization 2012).
Dementia is a syndrome due to a progressive condition that affects the brain and it may have any of a number of underlying pathologies, the most common being Alzheimer’s disease 1
(World Health Organization 2012). How each individual with dementia is affected by the condition varies according to the area of the individual’s brain damaged by the underlying condition and the individual’s pre-morbid personality. While memory loss may stereotypically be the most readily identified manifestation of dementia, people with dementia may also experience personality and behavioral changes as well as temporo-visuo-spatial perceptual problems. People with mild cognitive impairment have an increased risk of developing 4
Alzheimer’s disease and other forms of dementia. More than 50% of people with mild cognitive impairment will progress to dementia within five years. They experience cognitive loss greater than that associated with normal aging but with less impairment on performance than that experienced by people with dementia.
4
There are a number of drivers that may impact on the future prevalence of people with dementia or mild cognitive impairment who are employed or seeking employment. Firstly, earlier diagnosis of dementia and discovery of markers associated with the development of, in particular, Alzheimer’s disease mean that more people of working age will be identified.
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Secondly, the duration of the working life is being extended in many countries through the relaxation of mandatory retirement so that people may be five to 10 years older than past 5
generations before taking retirement or receiving a retirement pension. Aging is associated with development of dementia; potentially, the older the working population is, the greater the number of people with dementia or mild cognitive impairment will be in the work place. In 6
2013 there were approximately 3000 people of working age with dementia in Scotland. The Alzheimer’s Society estimates that about 1:1400 people in the UK are of working age and have dementia.
3
Thirdly, throughout the world the incidence of type 2 diabetes is increasing markedly. There are an estimated 347 million adults with type 2 diabetes worldwide; the number of adults with diabetes has doubled over the past three decades and it is projected that due to an aging and 7
increasingly obese population this figure will rise in coming decades. There is an association between type 2 diabetes and Alzheimer’s disease, and type 2 diabetes and other common 7
forms of dementia, in particular, vascular dementia. People with type 2 diabetes are at least 8
twice as likely to develop Alzheimer’s disease as people in the general population ). Finally, governmental policy, particularly in the United Kingdom (UK), put into practice by the UK Department of Work and Pensions, is to encourage people with disabilities to remain in employment wherever possible as there is broad agreement that employment is not only good 9
for people economically, but it also has physical and mental well-being benefits.
As
Robertson, Evans and Horsnell have suggested, younger people with dementia may withdraw from engagement in activities of daily living, from their community and from engagement in 10
remunerative employment as a consequence of the cognitive manifestations of the disease.
While much of the literature regarding dementia in the workplace has focused on the possible aetiology of the condition and its association with exposure to environmental factors, such as solvents, pesticides and aluminium dust, a recent systematic review by Then et al. suggested that psychologically complex and challenging work may have a preventive effect, reducing the 11
impact and/or delaying the cognitive and functional decline associated with dementia.
This
view is supported by Seidler et al. who summarized that Alzheimer’s disease is “negatively associated with diversity of activities and intensity of intellectual activities and positively associated with psychosocial inactivity and unproductive working”.
12(p.962)
Given these epidemiological predictions, the economic consequences of those predictions for the state, businesses and the individual and the knowledge that sustaining the individual in work or engaged in productive occupations has some ameliorating effect for all three, it is critical that an understanding is developed, from multiple perspectives, regarding the factors that determine the ability of the individual with dementia or mild cognitive impairment to cope successfully with working. Some research has demonstrated qualitative evidence of successful programs designed to support younger people with dementia in either supported 10
or open employment in, for example, a work buddy scenario.
While it is evident from the
existing research that little has been published with regard to maintaining remunerative employment in people with dementia, existing systematic reviews of literature that has considered other mental health conditions impacting on cognition have demonstrated the value to patients and clients of continuing engagement in productive, if not always paid, 13,14,15
occupations.
doi: 10.11124/jbisrir-2015-2033
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In considering this review, published systematic reviews in the Joanna Briggs Institue Database of Systematic Reviews and Implementation Reports, the Cochrane Library, Medline and Cinahl were searched and revealed no similar reviews to date. There are a number that may be useful in partially informing the proposed review background, for example, reviews of assistive technology, cognitive retraining or cognitive rehabilitation for dementia. Searches of title registrations in the the Joanna Briggs Institue Database of Systematic Reviews and Implementation Reports and the Cochrane Library found no current registered reviews close to these aims. This review will examine the evidence to date which is an important step in addressing this looming public health issue of how can people successfully sustain employment with dementia or mild cognitive impairment. We consider that the findings of this review may be useful in informing policy and further research.
Keywords Employment; dementia; mild cognitive impairment; carers; employers; voluntary and statutory services; safety
Inclusion criteria Types of participants This review will consider people with dementia or mild cognitive impairment who are in employment or seeking employment, their carers, actual or potential employers, therapists, co-workers and significant others. The participants of interest will be people of working age, 16 years and over of any gender or ethnicity regardless of co-morbidity or geographical location. Employment will include voluntary work, training and vocational rehabilitation. For the purposes of the review, people with any disease process resulting in dementia will be considered. Phenomena of interest The focus of this qualitative review is on people with dementia or mild cognitive impairment and the means by which they are or might be sustained in employment. The review will encompass consideration of the strategies and ways of managing dementia or mild cognitive impairment employed by the individual and other significant stakeholders in order to gain or sustain employment or pre-employment.
doi: 10.11124/jbisrir-2015-2033
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The key phenomena to be investigated are likely to include: 1. The needs, experiences and perceptions of people with dementia or mild cognitive impairment who are in employment or seeking employment. 2. The needs, experiences and perceptions of people who care for, partner or otherwise informally support people with dementia or mild cognitive impairment who are in employment or seeking employment. 3. The needs, experiences and perceptions of employers and co-workers of people with dementia or mild cognitive impairment. 4. The needs, experiences and perceptions of employees of statutory health, social care and other governmental and voluntary agencies on the employment of people with dementia or mild cognitive impairment. 5. The needs, experiences and perceptions with regard the self and agency facilitated management strategies utilized to sustain people with dementia or mild cognitive impairment in employment. 6. Perceived barriers to and facilitators of the employment of people with dementia or mild cognitive impairment. Settings for employment will include the home, the workplace, the community, statutory and voluntary agencies, and healthcare, social and vocational services. Studies may consider employment in its widest sense encompassing homeworking, volunteering, training, prevocational and vocational services as well as work. Context The context of the review will be in community, outpatient, social services, employment services and workplace settings Types of studies This review will consider studies that employ qualitative methodologies, for example, action research, phenomenology, grounded theory or ethnography. Where research studies are not available other text and opinion publications, such as government reports and opinion papers, will be considered.
Search strategy The search strategy aims to find both published and unpublished literature up to September 2014, with no search time limit in the past. The search will be limited to the English language. A three-phase strategy will be used in the search for evidence for this review. An initial search of CINAHL and Medline will be followed by an analysis of the key words contained in the articles, and of the index terms used by the search engines. Collaboratively the two reviewers will develop, from the list of keywords and index terms, a second search which will then be conducted using the databases listed below. Finally, the reference lists of the selected papers will be scanned for any pertinent literature that has been omitted.
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The databases will include: CINAHL Medline AMED Web of Science EMBASE PsycINFO PsycARTICLES Ethos The key search terms of the search strategy for the initial search of CINAHL are dementia, cognitive impairment, Alzheimer*, confus*, work*, employ*, occupation*, labour, job, vocation and will be filtered to include only articles published in the English language. The search strategy for the initial search of Medline will proceed as per the CINAHL search making amendments depending on Mesh terms and database classification.
Assessment of methodological quality The qualitative papers selected will be assessed by two independent reviewers for methodological rigour prior to inclusion in the final review. A standardized critical appraisal instrument from the Joanna Briggs Institute Qualitative Assessment and Review Instrument suite (JBI-QARI) (Appendix I) will be used to evaluate the papers. Any disagreements that arise between the two reviewers will be resolved through discussion or by a third reviewer. Where no qualitative studies are found textual papers selected for the retrieval will be assessed by two independent reviewers for authenticity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Narrative, Opinion and Text Assessment and Review Instrument (JBI-NOTARI) (Appendix I). Any disagreements that arise will be resolved through discussion or with a third reviewer.
Data collection Qualitative data will be extracted from studies included in the review using the standard data extraction tool from JBI-QARI (Appendix II). Where research studies are not available, textual data will be extracted from papers included in the review using the standardized data extraction tool from JBI-NOTARI (Appendix II). Data extracted may include opinions and conclusions of significance to the aims of the study.
Data synthesis Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that
doi: 10.11124/jbisrir-2015-2033
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can be used as a basis for evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form. Where research studies are not available, textual papers will, where possible, be pooled using JBI-NOTARI. This will involve the aggregation or synthesis of conclusions to generate a set of statements that represent that aggregation, through assembling and categorizing these conclusions on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible the conclusions will be presented in narrative form.
Conflict of interest The authors have identified no conflicts of interest.
Acknowledgements The authors wish to acknowledge the generous time allocated by NHS Grampian to the clinician in our team.
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References 1. World Health Organisation. Dementia: a public health priority. Geneva: World Health Organisation; 2012. 2. Prince M, Guerchet M, Prina M. Alzheimer’s Disease International policy brief for heads of government: the global impact of dementia 2013–2050. London: Alzheimer’s Disease International; 2013. 3. Alzheimer’s Society. Dementia 2013: the hidden voice of loneliness [Internet]. Alzheimer’s Society; 2013 [cited 2014 September 3]. Available from: http://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=1677 4. Gauthier S, et al. Mild cognitive impairment. Lancet, 2006; 367: pp. 1262–70 5. Department for Work and Pensions. Reviewing the state pension age [Internet]. Department for Work and Pensions; 2013 [cited 2014 October 1]. Available from: https://www.gov.uk/government/policies/reviewing-the-state-pension-age . 6. Alzheimer’s Scotland, About dementia: some facts and figures [Internet]. Alzheimer’s Scotland; 2013 [cited 2014 September 3]. Available from:http://www.alzscot.org/assets/0000/8674/IS16aboutdementia.pdf 7. Danaei G, et al. National, regional, and global trends in fasting plasma glucose and diabetes prevalence since 1980: systematic analysis of health examination surveys and epidemiological studies with 370 country-years and 2·7 million participants.
Lancet.
2011; 378: pp. 31–40 8. Ohara T et al. Glucose tolerance status and risk of dementia in the community: the Hisayama Study. Neurology, 2011; 77(12): pp. 1126-1134. 9. Roach P, Drummond N. ‘It’s nice to have something to do’: early-onset dementia and maintaining purposeful activity. [Internet]. J Psychiatr Ment Health Nurs 2014; 21(10): [cited 2014 October 21]. Available from:http://onlinelibrary.wiley.com/doi/10.1111/jpm.12154/pdf 10. Robertson J, Evans D, Horsnell T. Side by Side: A workplace engagement program for people with younger onset dementia. Dementia. 2013; 12(5): pp. 666–674 11. Then F, et al. Systematic review of the effect of the psychosocial working environment on cognition and dementia. Occup Environ Med. 2014; 71(5): pp. 358-365. 12. Seidler A, et al. Psychosocial work factors and dementia. Occup Environ Med. 2004; 61(12): pp. 962–971. 13. Arbesman M, Logsdon D. Occupational therapy interventions for employment and education for adults with serious mental illness: A systematic review. Am J Occup Ther. 2011; 65: pp. 238–246. 14. Gibson R, D’Amico M, Jaffe L, Arbesman M. Occupational therapy interventions for recovery in the areas of community integration and normative life roles for adults with serious mental illness: A systematic review. Am J Occup Ther, 2011; 65; pp. 247–256. 15. Wimpenny K, Savin-Baden M, Cook C. A qualitative research synthesis examining the effectiveness of interventions used by occupational therapists in mental health. Br J Occup Ther. 2014; 77(6): pp. 276–288.
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Appendix I: Appraisal instruments MAStARI appraisal instrument
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Appendix II: Data extraction instruments MAStARI data extraction instrument
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Sustaining adults with dementia or mild cognitive impairment in employment: a systematic review protocol of qualitative evidence David Robertson
1
Pamela Kirkpatrick Shona McCulloch
2
3
1 Institute of Health and Wellbeing Research and School of Health Sciences Robert Gordon University, Aberdeen, Scotland 2 Scottish Centre for Evidence-based Multi-professional Practice: a Collaborating Center of The Joanna Briggs Institute; Faculty of Health and Social Care, Robert Gordon University Aberdeen, Scotland 3 Adult Mental Health, Royal Cornhill Hospital, Aberdeen, Scotland
Corresponding author: David Robertson [email protected]
Review question/objective The aim of the systematic review is to identify and synthesize the best available qualitative evidence regarding the needs, experiences and perspectives of people with dementia or mild cognitive impairment who are either in employment or wish to gain employment and other significant stakeholders. This is a review of qualitative evidence as qualitative studies are known to be the most effective in elucidating needs, experiences and perspectives and may permit the reviewers to address the following questions: What are the needs, experiences and perceptions of people with dementia or mild cognitive impairment who are in employment or seeking employment? What are the needs, experiences and perceptions of people who care for, partner or otherwise informally support people with dementia or mild cognitive impairment who are in employment or seeking employment? What are the needs, experiences and perceptions of employers and co-workers of people with dementia or mild cognitive impairment? What are the needs, experiences and perceptions of employees of statutory health, social care and other governmental and voluntary agencies on the employment of people with dementia or mild cognitive impairment?
doi: 10.11124/jbisrir-2015-2033
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2015;13(3) 124 - 136
What are the needs, experiences and perspectives of people with dementia or mild cognitive impairment who are in employment or wish to gain employment and other significant stakeholders in regards to self and agency facilitated management strategies utilized to sustain people with dementia or mild cognitive impairment in employment? What are the needs, experiences and perspectives of people with dementia or mild cognitive impairment who are in employment or wish to gain employment and other significant stakeholders in regards to the factors that predict or facilitate the sustained employment of individuals with dementia or mild cognitive impairment? What are the needs, experiences and perspectives of people with dementia or mild cognitive impairment who are in employment or wish to gain employment and other significant stakeholders in regards to the factors that impede or preclude employment in individuals with dementia or mild cognitive impairment?
Background This review is focused on how people with dementia or a mild cognitive impairment who are employed, preparing for employment or who wish to gain employment might best be sustained in that employment. The impact of people with dementia or a mild cognitive impairment continuing to engage in productive remunerative employment is an emerging public health issue for the individual, their families or carers, employers, employment services and governmental agencies, and the safety of fellow employees, customers and members of the public. As an emerging public health problem, engagement in employment by younger people with dementia has attracted little attention from the research community worldwide. While epidemiological projections vary slightly, it is thought that dementia will increasingly affect low and middle income countries. The incidence and prevalence of dementia is increasing, and it is anticipated that 115 million people will be affected worldwide by the year 2050.
1,2
2
The incidence of dementia is estimated to double every 20 years. In the UK the
prevalence of dementia is predicted to double in the next 40 years (Alzheimer’s Society 2014) 1,3
and more than triple worldwide in the next 50 years (World Health Organization 2012).
Dementia is a syndrome due to a progressive condition that affects the brain and it may have any of a number of underlying pathologies, the most common being Alzheimer’s disease 1
(World Health Organization 2012). How each individual with dementia is affected by the condition varies according to the area of the individual’s brain damaged by the underlying condition and the individual’s pre-morbid personality. While memory loss may stereotypically be the most readily identified manifestation of dementia, people with dementia may also experience personality and behavioral changes as well as temporo-visuo-spatial perceptual problems. People with mild cognitive impairment have an increased risk of developing 4
Alzheimer’s disease and other forms of dementia. More than 50% of people with mild cognitive impairment will progress to dementia within five years. They experience cognitive loss greater than that associated with normal aging but with less impairment on performance than that experienced by people with dementia.
4
There are a number of drivers that may impact on the future prevalence of people with dementia or mild cognitive impairment who are employed or seeking employment. Firstly, earlier diagnosis of dementia and discovery of markers associated with the development of, in particular, Alzheimer’s disease mean that more people of working age will be identified.
doi: 10.11124/jbisrir-2015-2033
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JBI Database of Systematic Reviews & Implementation Reports
2015;13(3) 124 - 136
Secondly, the duration of the working life is being extended in many countries through the relaxation of mandatory retirement so that people may be five to 10 years older than past 5
generations before taking retirement or receiving a retirement pension. Aging is associated with development of dementia; potentially, the older the working population is, the greater the number of people with dementia or mild cognitive impairment will be in the work place. In 6
2013 there were approximately 3000 people of working age with dementia in Scotland. The Alzheimer’s Society estimates that about 1:1400 people in the UK are of working age and have dementia.
3
Thirdly, throughout the world the incidence of type 2 diabetes is increasing markedly. There are an estimated 347 million adults with type 2 diabetes worldwide; the number of adults with diabetes has doubled over the past three decades and it is projected that due to an aging and 7
increasingly obese population this figure will rise in coming decades. There is an association between type 2 diabetes and Alzheimer’s disease, and type 2 diabetes and other common 7
forms of dementia, in particular, vascular dementia. People with type 2 diabetes are at least 8
twice as likely to develop Alzheimer’s disease as people in the general population ). Finally, governmental policy, particularly in the United Kingdom (UK), put into practice by the UK Department of Work and Pensions, is to encourage people with disabilities to remain in employment wherever possible as there is broad agreement that employment is not only good 9
for people economically, but it also has physical and mental well-being benefits.
As
Robertson, Evans and Horsnell have suggested, younger people with dementia may withdraw from engagement in activities of daily living, from their community and from engagement in 10
remunerative employment as a consequence of the cognitive manifestations of the disease.
While much of the literature regarding dementia in the workplace has focused on the possible aetiology of the condition and its association with exposure to environmental factors, such as solvents, pesticides and aluminium dust, a recent systematic review by Then et al. suggested that psychologically complex and challenging work may have a preventive effect, reducing the 11
impact and/or delaying the cognitive and functional decline associated with dementia.
This
view is supported by Seidler et al. who summarized that Alzheimer’s disease is “negatively associated with diversity of activities and intensity of intellectual activities and positively associated with psychosocial inactivity and unproductive working”.
12(p.962)
Given these epidemiological predictions, the economic consequences of those predictions for the state, businesses and the individual and the knowledge that sustaining the individual in work or engaged in productive occupations has some ameliorating effect for all three, it is critical that an understanding is developed, from multiple perspectives, regarding the factors that determine the ability of the individual with dementia or mild cognitive impairment to cope successfully with working. Some research has demonstrated qualitative evidence of successful programs designed to support younger people with dementia in either supported 10
or open employment in, for example, a work buddy scenario.
While it is evident from the
existing research that little has been published with regard to maintaining remunerative employment in people with dementia, existing systematic reviews of literature that has considered other mental health conditions impacting on cognition have demonstrated the value to patients and clients of continuing engagement in productive, if not always paid, 13,14,15
occupations.
doi: 10.11124/jbisrir-2015-2033
Page 126
JBI Database of Systematic Reviews & Implementation Reports
2015;13(3) 124 - 136
In considering this review, published systematic reviews in the Joanna Briggs Institue Database of Systematic Reviews and Implementation Reports, the Cochrane Library, Medline and Cinahl were searched and revealed no similar reviews to date. There are a number that may be useful in partially informing the proposed review background, for example, reviews of assistive technology, cognitive retraining or cognitive rehabilitation for dementia. Searches of title registrations in the the Joanna Briggs Institue Database of Systematic Reviews and Implementation Reports and the Cochrane Library found no current registered reviews close to these aims. This review will examine the evidence to date which is an important step in addressing this looming public health issue of how can people successfully sustain employment with dementia or mild cognitive impairment. We consider that the findings of this review may be useful in informing policy and further research.
Keywords Employment; dementia; mild cognitive impairment; carers; employers; voluntary and statutory services; safety
Inclusion criteria Types of participants This review will consider people with dementia or mild cognitive impairment who are in employment or seeking employment, their carers, actual or potential employers, therapists, co-workers and significant others. The participants of interest will be people of working age, 16 years and over of any gender or ethnicity regardless of co-morbidity or geographical location. Employment will include voluntary work, training and vocational rehabilitation. For the purposes of the review, people with any disease process resulting in dementia will be considered. Phenomena of interest The focus of this qualitative review is on people with dementia or mild cognitive impairment and the means by which they are or might be sustained in employment. The review will encompass consideration of the strategies and ways of managing dementia or mild cognitive impairment employed by the individual and other significant stakeholders in order to gain or sustain employment or pre-employment.
doi: 10.11124/jbisrir-2015-2033
Page 127
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2015;13(3) 124 - 136
The key phenomena to be investigated are likely to include: 1. The needs, experiences and perceptions of people with dementia or mild cognitive impairment who are in employment or seeking employment. 2. The needs, experiences and perceptions of people who care for, partner or otherwise informally support people with dementia or mild cognitive impairment who are in employment or seeking employment. 3. The needs, experiences and perceptions of employers and co-workers of people with dementia or mild cognitive impairment. 4. The needs, experiences and perceptions of employees of statutory health, social care and other governmental and voluntary agencies on the employment of people with dementia or mild cognitive impairment. 5. The needs, experiences and perceptions with regard the self and agency facilitated management strategies utilized to sustain people with dementia or mild cognitive impairment in employment. 6. Perceived barriers to and facilitators of the employment of people with dementia or mild cognitive impairment. Settings for employment will include the home, the workplace, the community, statutory and voluntary agencies, and healthcare, social and vocational services. Studies may consider employment in its widest sense encompassing homeworking, volunteering, training, prevocational and vocational services as well as work. Context The context of the review will be in community, outpatient, social services, employment services and workplace settings Types of studies This review will consider studies that employ qualitative methodologies, for example, action research, phenomenology, grounded theory or ethnography. Where research studies are not available other text and opinion publications, such as government reports and opinion papers, will be considered.
Search strategy The search strategy aims to find both published and unpublished literature up to September 2014, with no search time limit in the past. The search will be limited to the English language. A three-phase strategy will be used in the search for evidence for this review. An initial search of CINAHL and Medline will be followed by an analysis of the key words contained in the articles, and of the index terms used by the search engines. Collaboratively the two reviewers will develop, from the list of keywords and index terms, a second search which will then be conducted using the databases listed below. Finally, the reference lists of the selected papers will be scanned for any pertinent literature that has been omitted.
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The databases will include: CINAHL Medline AMED Web of Science EMBASE PsycINFO PsycARTICLES Ethos The key search terms of the search strategy for the initial search of CINAHL are dementia, cognitive impairment, Alzheimer*, confus*, work*, employ*, occupation*, labour, job, vocation and will be filtered to include only articles published in the English language. The search strategy for the initial search of Medline will proceed as per the CINAHL search making amendments depending on Mesh terms and database classification.
Assessment of methodological quality The qualitative papers selected will be assessed by two independent reviewers for methodological rigour prior to inclusion in the final review. A standardized critical appraisal instrument from the Joanna Briggs Institute Qualitative Assessment and Review Instrument suite (JBI-QARI) (Appendix I) will be used to evaluate the papers. Any disagreements that arise between the two reviewers will be resolved through discussion or by a third reviewer. Where no qualitative studies are found textual papers selected for the retrieval will be assessed by two independent reviewers for authenticity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Narrative, Opinion and Text Assessment and Review Instrument (JBI-NOTARI) (Appendix I). Any disagreements that arise will be resolved through discussion or with a third reviewer.
Data collection Qualitative data will be extracted from studies included in the review using the standard data extraction tool from JBI-QARI (Appendix II). Where research studies are not available, textual data will be extracted from papers included in the review using the standardized data extraction tool from JBI-NOTARI (Appendix II). Data extracted may include opinions and conclusions of significance to the aims of the study.
Data synthesis Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent that aggregation, through assembling the findings rated according to their quality, and categorizing these findings on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that
doi: 10.11124/jbisrir-2015-2033
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can be used as a basis for evidence-based practice. Where textual pooling is not possible the findings will be presented in narrative form. Where research studies are not available, textual papers will, where possible, be pooled using JBI-NOTARI. This will involve the aggregation or synthesis of conclusions to generate a set of statements that represent that aggregation, through assembling and categorizing these conclusions on the basis of similarity in meaning. These categories are then subjected to a meta-synthesis in order to produce a single comprehensive set of synthesized findings that can be used as a basis for evidence-based practice. Where textual pooling is not possible the conclusions will be presented in narrative form.
Conflict of interest The authors have identified no conflicts of interest.
Acknowledgements The authors wish to acknowledge the generous time allocated by NHS Grampian to the clinician in our team.
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Appendix I: Appraisal instruments MAStARI appraisal instrument
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Appendix II: Data extraction instruments MAStARI data extraction instrument
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