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SYSTEMATIC REVIEW PROTOCOLS

The effectiveness of meaningful occupation interventions for people living with dementia in residential aged care: a systematic review protocol

Travers, Catherine; MacAndrew, Margaret; Hines, Sonia; O'Reilly, Maria; Fielding, Elaine; Beattie, Elizabeth; Brooks, Deborah

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JBI Database of Systematic Reviews and Implementation Reports: April 2015 - Volume 13 - Issue 4 - p 87-99
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Review question/objective

What is the effectiveness of meaningful occupation interventions for people living with dementia in residential aged care facilities (RACFs)?

More specifically, the objectives are to identify:

The effectiveness of interventions based on engaging residents of RACFs who have dementia in meaningful occupation (activities that have meaning for the individual) on: quality of life, behavioral and psychological symptoms of dementia (BPSD) (such as agitation, aggression, depression, wandering, apathy, etc.), mood, function, cognition, and sleep.

Background

Dementia is a term used to describe a group of symptoms characterized by irreversible cognitive, functional and behavioral decline.1 It is a leading cause of disability in later life1 and often precipitates institutional placement in developed countries.2 Frequently, BPSD such as wandering, agitation, aggression, disinhibition and apathy accompany dementia, and have been reported in as many as 86% of patients with dementia living in residential care settings.3 These symptoms not only cause distress to the individual concerned but negatively impact upon the quality of life of carers and co-residents, and lead to considerable stress and burn-out in care staff.4,5

Managing BPSD is one of the most significant challenges in caring for people with dementia, and as pharmacological approaches are mainly of benefit in the short-term and pose safety concerns in these patients,6 non-pharmacological interventions have been recommended as first-line strategies to ameliorate BPSD whenever possible.7 While a wide range of psychosocial and behavioral interventions including animal assisted therapy, music therapy, sensory stimulation, recreation therapy, behavioral therapy and exercise interventions, among others, have been trialed to address BPSD in a range of settings,8 the evidence regarding their effectiveness remains unclear.

Recently, however, O'Connor and colleagues,9,10 reported that music therapy interventions, physical activity, recreation and validation therapy were moderately effective in reducing agitation, disruptive behavior, apathy and depression in people with dementia following two systematic reviews of the literature. Importantly, the interventions that tended to be more effective were those that were individually tailored to meet the interests, preferences and abilities of the person with dementia.9–11 A similar finding was also recently reported by Cohen-Mansfield and colleagues,12 who found that non-pharmacological interventions individualized to address unmet needs, such as boredom or pain and chosen to fit the person's need, past identity, preferences and abilities, were statistically more effective than a control in decreasing agitation in people with dementia. Likewise, Kolanowski and colleagues have also shown that personalized recreational activities tailored to take into account the person's previous interest and current abilities were effective in reducing agitation compared to baseline.13

The provision of personalized activities is consistent with person-centered care which was promulgated by Kitwood14 and has been the predominant philosophy of care for people with dementia in recent years. It is based on the premise that people with dementia are unique individuals with the same value as any other person and ought to be recognized and responded to accordingly. The importance of tailoring interventions to meet the individual preferences of people with dementia has however only recently been recognized, and was not considered in many early intervention studies in which an intervention (e.g. listening to music) was introduced as a group activity, irrespective of whether the person with dementia had an interest in or enjoyed the activity.15 Activities or interventions that are individually tailored to address the individual's needs are more likely to engage the person with dementia and therefore be more enjoyable and meaningful for them than an activity delivered in a group setting. As BPSD are thought to result, in part, from people with dementia having unmet needs that they are otherwise unable to express7 (e.g. for meaningful activity and social interaction), the degree to which an activity is meaningful to the person and hence engages them may be the mechanism underlying its effectiveness or lack thereof. The meaningfulness of an activity or intervention for people with dementia is an important dimension that is likely to vary greatly across intervention studies and this difference may account, at least in part, for some of the differing conclusions that reviewers have reported.

Studies have shown that activities that are meaningful for people with dementia are very similar to those for people without dementia,16 and include the “spectrum of occupations a person performs in his or her everyday life that are perceived as significant to a person”(page 385).16(p. 385) After conducting a series of focus groups with people with dementia living in care homes regarding what constitutes meaningful activities, Harmer and Orrell17 concluded that meaningful activities were those that addressed their psychological and social needs. Hence, meaningful occupations include a wide variety of leisure, social and recreational activities, household chores, and work related activities.17 Involvement in these activities becomes meaningful in three ways: by creating a feeling of pleasure and enjoyment; by creating a sense of connection and belonging; and by promoting a sense of autonomy and personal identity.16

Hence, meaningful activities encompass a diverse range of activities and interventions, and while a number of reviews of psychosocial interventions for BPSD have been undertaken, no systematic review of interventions tailored to be meaningful for people with dementia living in RACFs has been undertaken. Such a review is important as it may shed light on an important mechanism that may underpin, at least in part, the effectiveness or otherwise of interventions for BPSD. Thus, this systematic review aims to examine the effectiveness of meaningful activity interventions to address BPSD (agitation, aggression, depression, wandering and apathy), quality of life, sleep, function, engagement and function, for people with dementia living permanently in RACFs.

Definition of “meaningful occupation”

For the purpose of this review, “meaningful occupation” will be defined as any task or activity which is important and meaningful to the person with dementia (adapted from Hammell)18 and hence includes a wide range of activities and interventions.

Inclusion criteria

Types of participants

This review will consider studies that include participants with a confirmed diagnosis of any type of dementia living in RACFs/long term care/nursing homes/permanent care.

Types of intervention(s)/phenomena of interest

This review will consider studies that evaluate non-pharmacological interventions that are based on occupational or activity interventions considered to be meaningful to the person with dementia, and tailoring the intervention to meet their needs, abilities, interests and/or preferences will be required as part of the study's methodology. Such interventions may include reminiscence therapy, exercise therapy, music therapy, individualized activity, behavioral interventions, recreational therapy, diversional therapy and psychosocial interventions. Trials of combinations of two or more such interventions will also be considered. Interventions may be in comparison to usual care, other meaningful occupation interventions, or any other non-pharmacological control or comparator.

Types of outcomes

This review will consider studies that include the following outcome measures: 1) quality of life, as measured by a validated tool such as Dementia Quality of Life (DEMQOL), Quality of Life in Alzheimer's Disease (QOL-AD), Quality of Life in Late-Stage Dementia (QUALID) or Assessment of Quality of Life (AQoL); 2) mood as measured by a validated tool such as the Cornell Scale for Depression in Dementia (CHAMP) or Geriatric Depression Scale (GDS); 3) behavioral and psychological symptoms of dementia (BPSD) as measured by a validated tool such as the Neuropsychiatric Inventory (NPI) or Behavioral Pathology in Alzheimer's Disease (BEHAVE-AD); 4) function as measured by a validated tool such as Alzheimer's Disease Co-operative Study - Activities of Daily Living Inventory (ADCS-ADL), Disability Assessment for Dementia (DAD) or Cleveland Scale for Activities of Daily Living (CSALD); 5) cognition as measured by Modified Mini Mental Exam (3MS), The Alzheimer's Disease Assessment Scale - Cognition (ADAS-Cog), Psychogeriatric Assessment Scale (PAS), Rowland Universal Dementia Assessment Scale (RUDAS), Kimberley Indigenous Cognitive Assessment (KICA-Cog), or Montreal Cognitive Assessment (MoCA); and 5) sleep as measured by a validated scale such as the Pittsburgh Sleep Quality Index (PSQI) or Epsworth Sleepiness Scale (ESS).

Types of studies

This review will consider experimental study designs including randomized and non-randomized controlled trials, quasi-experimental, and before and after studies, for inclusion. The review will also consider observational study designs such as cohort studies, case series, or cross sectional studies.

Search strategy

The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by an analysis of text words contained in the title and abstract, and of the index terms used to describe article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Thirdly, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English since 2004 (selected as the concept of person-centered care was routinely adopted in RACFs around this time) will be considered for inclusion in this review.

The databases to be searched include:

PubMED, CINAHL, PsycInfo, ISI Web of Science, OTSeeker, Embase, Cochrane CENTRAL, clinicaltrials.gov

The search for unpublished studies will include:

Mednar, OpenSIGLE, New York Academy of Medicine Library Gray Literature Report and ProQuest Dissertations and Theses.

Initial keywords to be used will be:

Set 1: Condition

(Dementia OR Alzheimer) AND

Set 2: Meaningful occupation/ activity

(meaningful OR tailored OR personalized OR individualized OR preferred OR preference based OR person-centered OR pleasurable OR engagement) AND (occupation OR activity OR therapy OR intervention OR program OR psycho-social OR behavioral OR diversional OR recreation OR Montessori OR support group program) OR (reminiscence OR life-story OR exercise OR pet OR music OR sensory OR massage OR touch OR aromatherapy OR complementary OR leisure OR recreation)

Set 3: Setting

AND (residential care OR residential aged care OR long-term care OR nursing home)

Assessment of methodological quality

Papers selected for full-text retrieval will first be screened for congruence with the review's inclusion criteria, then studies that meet the inclusion criteria will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Meta-Analysis of Statistics Assessment and Review Instrument (JBI-MAStARI). Any disagreements that arise between the reviewers will be resolved through adjudication by the third reviewer. The JBI-MAStARI instrument assesses the risk of bias across ten quality criteria for experimental studies, and nine criteria for descriptive studies (Appendix I).

Data collection

Data will be extracted from papers included in the review using the standardized data extraction tool from JBI-MAStARI (Appendix II). The data extracted will include specific details about the interventions, populations, study methods and outcomes of significance to the review question and specific objectives. Specific details of interventions and comparisons, outcome measurements and results will be extracted. For continuous data, means and standard deviations or standard errors will be extracted. For dichotomous data, event counts and group numbers will be extracted. In addition, details of individual studies' interventions, populations, outcomes and demographics will be extracted.

Data synthesis

Quantitative data will, where possible, be pooled in statistical meta-analysis using RevMan 5.2. Effect sizes expressed as odds ratio (for categorical data) and weighted mean differences (for continuous data) and their 95% confidence intervals will be calculated for analysis. Heterogeneity will be assessed statistically using the standard Chi-square and also explored using subgroup analyses based on the different study designs included in this review (i.e. effectiveness reported in randomized controlled trials versus observational studies). Heterogeneity will be further explored by calculation of the I2 statistic. If sufficient data is available from the included studies, subgroup analyses will be conducted to compare the effectiveness of interventions on different population subgroups (e.g. male versus female participants), and/or different intervention types (e.g. individual versus group interventions). Where statistical pooling is not possible the findings will be presented in narrative form including tables and figures to aid in data presentation where appropriate.

Conflicts of interest

The authors declare no conflicts of interest.

Acknowledgements

We would like to acknowledge the Dementia Research Collaborative Centre (DCRC) for financially supporting this review.

References

1. Australian Institute of Health and Welfare: Dementia in Australia. Cat. no. AGE 70 Canberra: AIHW; 2012. p. ix-2.
2. Knapp M, Prince M: Dementia UK: The Full Report. London: Alzheimer's Society; 2007. p. 3.
3. Ballard CG, Margallo-Lana M, Fossey J, Reichelt K, Myint P, Potkins D, O'Brien J: A 1-year follow-up study of behavioral and psychological symptoms in dementia among people in care environments. J Clin Psychiatry 2001, 62:631-636. http://www.ncbi.nlm.nih.gov/pubmed/11561936.
4. Astrom S, Karlsson S, Sandvide A, Bucht G, Eisemann M, Norberg A, Saveman BI: Staff's experience of and the management of violent incidents in elderly care. Scand J Caring Sci 2004, 18:410-416. http://www.ncbi.nlm.nih.gov/pubmed/15598249.
5. Gilley DW, Whalen ME, Wilson RS, Bennett DA: Hallucinations and associated factors in Alzheimer's disease. J Neuropsychiatry Clin Neurosci 1991, 3:371-376. http://www.ncbi.nlm.nih.gov/pubmed/1821255.
6. Schneider LS, Dagerman KS, Insel P: Risk of death with atypical antipsychotic drug treatment for dementia: meta-analysis of randomized placebo-controlled trials. JAMA 2005, 294:1934-1943. http://www.ncbi.nlm.nih.gov/pubmed/16234500.
7. International Psychogeriatric Association (IPA): The IPA Complete Guides to Behavioral and Psychological Symptoms of Dementia (BPSD) - Specialists Guide. IL, United States: IPA; 2012. p. 99.
8. Livingston G, Kelly L, Lewis-Holmes E, Baio G, Morris S, Patel N, Omar RZ, Katona C, Cooper C: A systematic review of the clinical effectiveness and cost-effectiveness of sensory, psychological and behavioural interventions for managing agitation in older adults with dementia. Health Technol Assess 2014, 18:1-226, v-vi. http://www.ncbi.nlm.nih.gov/pubmed/24947468.
9. O'Connor DW, Ames D, Gardner B, King M: Psychosocial treatments of psychological symptoms in dementia: a systematic review of reports meeting quality standards. Int Psychogeriatr 2009, 21:241-251. http://www.ncbi.nlm.nih.gov/pubmed/19138459.
10. O'Connor DW, Ames D, Gardner B, King M: Psychosocial treatments of behavior symptoms in dementia: a systematic review of reports meeting quality standards. Int Psychogeriatr 2009, 21:225-240. http://www.ncbi.nlm.nih.gov/pubmed/18814806.
11. van der Ploeg ES, Eppingstall B, Camp CJ, Runci SJ, Taffe J, O'Connor DW: A randomized crossover trial to study the effect of personalized, one-to-one interaction using Montessori-based activities on agitation, affect, and engagement in nursing home residents with Dementia. Int Psychogeriatr 2013, 25:565-575. http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=8840679&fileId=S1041610212002128.
12. Cohen-Mansfield J, Thein K, Marx MS, Dakheel-Ali M, Freedman L: Efficacy of nonpharmacologic interventions for agitation in advanced dementia: a randomized, placebo-controlled trial. J Clin Psychiatry 2012, 73:1255-1261. http://www.ncbi.nlm.nih.gov/pubmed/23059151.
13. Kolanowski AM, Litaker M, Buettner L: Efficacy of theory-based activities for behavioral symptoms of dementia. Nursing Research 2005, 54:219-228. http://gateway.library.qut.edu.au/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=c8h&AN=2009016874&site=ehost-live&scope=site.
14. Kitwood T: Dementia Reconsidered: The Person Comes First. Buckingham: Open University Press; 1997.
15. Groene RW: Effectiveness of music therapy 1:1 intervention with individuals having senile dementia of the alzheimer's type. Journal of music therapy 1993, 30:138-157.
16. Phinney A, Chaudhury H, O'Connor DL: Doing as much as I can do: the meaning of activity for people with dementia. Aging Ment Health 2007, 11:384-393. http://www.ncbi.nlm.nih.gov/pubmed/17612802.
17. Harmer BJ, Orrell M: What is meaningful activity for people with dementia living in care homes? A comparison of the views of older people with dementia, staff and family carers. Aging Ment Health 2008, 12:548-558. http://www.tandfonline.com/doi/abs/10.1080/13607860802343019.
18. Hammell KW: Dimensions of meaning in the occupations of daily life. Can J Occup Ther 2004, 71:296-305. http://www.ncbi.nlm.nih.gov/pubmed/15633880.

Appendix I: Appraisal instruments

MAStARI appraisal instrument

FAU1-8
Figure
FAU2-8
Figure
FAU3-8
Figure

Appendix II: Data extraction instruments

MAStARI data extraction instrument

FAU4-8
Figure
FAU5-8
Figure
Keywords:

Dementia; Alzheimer; meaningful; tailored; personalized; individualized; reminiscence; life-story; exercise; residential care; residential aged care; long-term care; nursing home

© 2015 by Lippincott williams & Wilkins, Inc.