Hostname: page-component-586b7cd67f-vdxz6 Total loading time: 0 Render date: 2024-11-26T08:08:56.044Z Has data issue: false hasContentIssue false

Self-management and social participation in community-dwelling people with mild dementia: a review of measuring instruments

Published online by Cambridge University Press:  06 February 2019

Floriana Mangiaracina
Affiliation:
Department of Psychiatry, Amsterdam University Medical Centers - VUmc, Amsterdam Public Health Research Institute, Amsterdam, the Netherlands
Franka Meiland
Affiliation:
Department of Psychiatry, Amsterdam University Medical Centers - VUmc, Amsterdam Public Health Research Institute, Amsterdam, the Netherlands
Yvonne Kerkhof
Affiliation:
Department of Psychiatry, Amsterdam University Medical Centers - VUmc, Amsterdam Public Health Research Institute, Amsterdam, the Netherlands Centre for nursing Research, Saxion University of Applied Sciences, Deventer/Enschede, the Netherlands
Martin Orrell
Affiliation:
Institute of Mental Health, University of Nottingham, Nottingham, UK
Maud Graff
Affiliation:
Radboud University Medical Centre, Donders Institute for Cognition, Brain and Behaviour, Scientific Institute for Quality of Healthcare, Radboud Alzheimer Centre, Nijmegen, the Netherlands
Rose-Marie Dröes*
Affiliation:
Department of Psychiatry, Amsterdam University Medical Centers - VUmc, Amsterdam Public Health Research Institute, Amsterdam, the Netherlands
*
Correspondence should be addressed to: Rose-Marie Dröes, Department of Psychiatry, Amsterdam UMC, location VUmc, GGZinGeest Dienst onderzoek en Innovatie, Oldenaller 1, PO Box 74077, 1070 BB Amsterdam, the Netherlands. Phone: + 31-20-7885454. Email: [email protected].

Abstract

Background:

In order to evaluate interventions promoting social health in people with dementia it is essential to have reliable and valid measures. The present review aims to provide an overview of available instruments for the assessment of two domains of social health in community-dwelling people with mild dementia, i.e., the ability to manage life with some degree of independence (self-management) and participation in social activities.

Methods:

An electronic search was conducted in the following databases: PubMed, CINAHL, and PsycINFO. Characteristics of the instruments, feasibility and psychometric properties of the instruments included are reported on.

Results:

We identified eight instruments measuring aspects of self-management and three instruments measuring social participation. Validity and reliability of self-management instruments varied between moderate and good. Little information was found on the psychometric properties of the instruments for social participation. In general, feasibility and responsiveness data regarding application in community-dwelling people with dementia were scarce for both types of instruments.

Conclusions:

Future research into assessment tools for social health should focus on the development of instruments for self-management that also cover the areas of coping with and adapting to the emotional consequences of the disease; instruments for social participation covering the involvement in social interactions that are experienced as meaningful by the person; and on the psychometric properties and responsiveness of instruments. More attention should also be given to the feasibility (ease of use) of these instruments for people with mild dementia, professionals, and researchers.

Type
Review Article
Copyright
© International Psychogeriatric Association 2019 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Artaso Irigoyen, B., Goni Sarries, A., Gomez Martinez, A. R. and Garcia Nicholas, M. A. (2002). Direct and indirect assessment of the patient with dementia. Geriatrika, 18, 4549 (Spanish).Google Scholar
Baum, C. M. and Edwards, D. (2008). ACS: Activity Card Sort. Bethesda, MD: AOTA Press, American Occupational Therapy Association.Google Scholar
Béland, F., Zunzunegui, M. V., Alvarado, B., Otero, A. and del Ser, T. (2005). Trajectories of cognitive decline and social relations. The Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 60, P320P330. doi: 10.1093/geronb/60.6.p320.CrossRefGoogle ScholarPubMed
Black, B. S. et al. (2013). Unmet needs of community-residing persons with dementia and their informal caregivers: findings from the maximizing independence at home study. Journal of the American Geriatrics Society, 61, 20872095. doi: 10.1111/jgs.12549.CrossRefGoogle ScholarPubMed
Chung, J. C. C. (2006). Care needs assessment of older Chinese individuals with dementia of Hong Kong. Aging and Mental Health, 10, 631637. doi: 10.1080/13607860600650532.CrossRefGoogle ScholarPubMed
Crowe, M., Andel, R., Pedersen, N. L., Johansson, B. and Gatz, M. (2003). Does participation in leisure activities lead to reduced risk of Alzheimer’s disease? A prospective study of Swedish twins. Journals of Gerontology Series B: Psychological Sciences and Social Sciences, 58, P249P255. doi: 10.1093/geronb/58.5.P249.CrossRefGoogle ScholarPubMed
Davis, L. A., Hoppes, S. and Chesbro, S. B. (2005). Cognitive-communicative and independent living skills assessment in individuals with dementia: a pilot study of environmental impact. Topics in Geriatric Rehabilitation, 21, 136143. doi: 10.1097/00013614-200504000-00009.CrossRefGoogle Scholar
De Vugt, M. and Dröes, R. M. (2017). Social health in dementia. Towards a positive dementia discourse. Aging Mental Health, 21, 13. doi: 10.1080/13607863.2016.1262822.CrossRefGoogle ScholarPubMed
Donkers, H. W., van der Veen, D. J., Vernooij-Dassen, M. J., Nijhuis-van der Sanden, M. W. G. and Graff, M. J. L. (2017). Social participation of people with cognitive problems and their caregivers: a feasibility evaluation of the social fitness programme. International Journal of Geriatric Psychiatry, 32, e50e63. doi: 10.1002/gps.4651.CrossRefGoogle ScholarPubMed
Donkers, H., Vernooij-Dassen, M., van der Veen, D., Nijhuis van der Sanden, M. and Graff, M. (2018). Social participation perspectives of people with cognitive problems and their caregivers: a descriptive qualitative study. Ageing & Society, doi: 10.1017/S0144686X18000077.Google Scholar
Donkers, H., Vernooij-Dassen, M. Y. R. R. A., Van der Veen, D. I. N. J. A., Van der Sanden, M. N., & Graff, M. (2018). Social participation perspectives of people with cognitive problems and their care-givers: a descriptive qualitative study. Ageing & Society, 127.Google Scholar
Dröes, R. M. et al. (2017). Social health and dementia: a European consensus on the operationalisation of the concept and directions for research and practice. Aging and Mental Health, 21, 417. doi: 10.1080/13607863.2016.1254596.CrossRefGoogle Scholar
Fisher, A. G. and Jones, K. B. (1999). Assessment of Motor and Process Skills (Vol. 375). Fort Collins, CO, Chicago: Three Star Press.Google Scholar
Gitlin, L. N., Corcoran, M., Winter, L., Boyce, A. and Hauck, W. W. (2001). A randomized, controlled trial of a home environmental intervention: effect on efficacy and upset in caregivers and on daily function of persons with dementia. The Gerontologist, 41, 414. doi: 10.1093/geront/41.1.4.CrossRefGoogle ScholarPubMed
Graff, M. J. L. et al. (2006b). How can occupational therapy improve the daily performance and communication of an older patient with dementia and his primary caregiver? A case study. Dementia, Journal of Social Research & Practice, 5, 503532.Google Scholar
Grant, M. J. and Booth, A. (2009). A typology of reviews: an analysis of 14 review types and associated methodologies. Health Information & Libraries Journal, 26, 91108. doi: 10.1111/j.1471-1842.2009.00848.x.CrossRefGoogle ScholarPubMed
Hoppes, S., Davis, L. A. and Thompson, D. (2003). Environmental effects on the assessment of people with dementia: a pilot study. American Journal of Occupational Therapy, 57, 396402. doi: 10.5014/ajot.57.4.396.CrossRefGoogle ScholarPubMed
Huber, M. et al. (2011). How should we define health? BMJ: British Medical Journal (Online), 343, d4163.CrossRefGoogle ScholarPubMed
Kerkhof, Y. J., Graff, M. J., Bergsma, A., de Vocht, H. H. and Dröes, R. M. (2016). Better self-management and meaningful activities thanks to tablets? Development of a person-centered program to support people with mild dementia and their carers through use of hand-held touch screen devices. International Psychogeriatric, 28, 19171929. doi: 10.1017/S1041610216001071.CrossRefGoogle ScholarPubMed
Kotwal, A. A., Kim, J., Waite, L. and Dale, W. (2016). Social function and cognitive status: results from a US nationally representative survey of older adults. Journal of General Internal Medicine, 31, 854862. doi: 10.1007/s11606-016-3696-0.CrossRefGoogle ScholarPubMed
Kuiper, J. S. et al. (2015). Social relationships and risk of dementia: a systematic review and meta-analysis of longitudinal cohort studies. Ageing Research Reviews, 22, 3957. doi: 10.1016/j.arr.2015.04.006.CrossRefGoogle ScholarPubMed
Law, M. et al. (2014). Canadian Occupational Performance Measure (COPM). Canada: CAOT Publications.Google Scholar
Lawton, M. P. and Brody, E. M. (1969). Assessment of older people: self-maintaining and instrumental activities of daily living. The Gerontologist, 9, 179186. doi: 10.1093/geront/9.3_part_1.179.CrossRefGoogle ScholarPubMed
Levasseur, M., Richard, L., Gauvin, L. and Raymond, E. (2010). Inventory and analysis of definitions of social participation found in the aging literature: proposed taxonomy of social activities. Social Science & Medicine, 71, 21412149. doi: 10.1016/j.socscimed.2010.09.041.CrossRefGoogle ScholarPubMed
Luiselli, J. K. and Reed, D. D. (2011). Social validity. In: Goldstein, S. and Naglieri, J. A. (eds.), Encyclopedia of Child Behavior and Development. Boston, MA: Springer.Google Scholar
Mahoney, F. I. and Barthel, D. W. (1965). Functional evaluation: the Barthel index: a simple index of independence useful in scoring improvement in the rehabilitation of the chronically ill. Maryland State Medical Journal, 4, 5661.Google Scholar
Mahurin, R. K., DeBettignies, B. H. and Pirozzolo, F. J. (1991). Structured assessment of independent living skills: preliminary report of a performance measure of functional abilities in dementia. Journal of Gerontology, 46, P58P66.CrossRefGoogle ScholarPubMed
Martin, F., Turner, A., Wallace, L. M. and Bradbury, N. (2013). Conceptualisation of self-management intervention for people with early stage dementia. European Journal of Ageing, 10, 7587. doi: 10.1007/s10433-012-0253-5.CrossRefGoogle ScholarPubMed
McWalter, G. et al. (1998). A community needs assessment: the care needs assessment pack for dementia (CarenapD)—its development, reliability and validity. International Journal of Geriatric Psychiatry, 13, 1622. doi: 10.1002/(SICI)1099-1166(199801)13:1<16::AID-GPS721>3.0.CO;2-N.3.0.CO;2-N>CrossRefGoogle Scholar
Meaney, A. M., Croke, M. and Kirby, M. (2005). Needs assessment in dementia. International Journal of Geriatric Psychiatry, 20, 322329. doi: 10.1002/gps.1284.CrossRefGoogle ScholarPubMed
Miranda-Castillo, C. et al. (2010). Unmet needs, quality of life and support networks of people with dementia living at home. Health and Quality of Life Outcomes, 8, 132. doi: 10.1186/1477-7525-8-132.CrossRefGoogle ScholarPubMed
Mountain, G. A. (2006). Self-management for people with early dementia: an exploration of concepts and supporting evidence. Dementia, 5, 429446. doi: 10.1177/1471301206067117.CrossRefGoogle Scholar
Mountain, G. A. and Craig, C. L. (2012). What should be in a self-management programme for people with early dementia? Aging & Mental Health, 16, 576583. doi: 10.1080/13607863.2011.651430.CrossRefGoogle Scholar
Orrell, M., Butler, R. and Bebbington, P. (2000). Social factors and the outcome of dementia. International Journal of Geriatric Psychiatry, 15, 515520. doi: 10.1002/1099-1166(200006)15:6<515::AID-GPS147>3.0.CO;2-U.3.0.CO;2-U>CrossRefGoogle Scholar
Pinto-Bruno, Á. C., García-Casal, J. A., Csipke, E., Jenaro-Río, C. and Franco-Martín, M. (2017). ICT-based applications to improve social health and social participation in older adults with dementia. A systematic literature review. Aging & Mental Health, 21, 5865. doi: 10.1080/13607863.2016.1262818.CrossRefGoogle ScholarPubMed
Quinn, C., Toms, G., Anderson, D. and Clare, L. (2016). A review of self-management interventions for people with dementia and mild cognitive impairment. Journal of Applied Gerontology, 35, 11541188. doi: 10.1177/0733464814566852.CrossRefGoogle ScholarPubMed
Reynolds, T. et al. (2000). Camberwell assessment of need for the elderly (CANE): development, validity and reliability. The British Journal of Psychiatry, 176, 444452. doi: 10.1192/bjp.176.5.444.CrossRefGoogle Scholar
Sainsbury, A., Seebass, G., Bansal, A. and Young, J. B. (2005). Reliability of the Barthel index when used with older people. Age and Ageing, 34, 228232. doi: 10.1093/ageing/afi063.CrossRefGoogle ScholarPubMed
Schmidt, K. S. and Lieto, J. M. (2005). Validity of the medication administration test among older adults with and without dementia. The American Journal of Geriatric Pharmacotherapy, 3, 255261. doi: 10.1016/j.amjopharm.2005.12.003.CrossRefGoogle ScholarPubMed
Schmitter-Edgecombe, M., Parsey, C. and Lamb, R. (2014). Development and psychometric properties of the instrumental activities of daily living: compensation scale. Archives of Clinical Neuropsychology, 29, 776792. doi: 10.1093/arclin/acu053.CrossRefGoogle ScholarPubMed
Sørensen, L. V., Waldorff, F. B. and Waldemar, G. (2008). Social participation in home-living patients with mild Alzheimer’s disease. Archives of Gerontology and Geriatrics, 47, 291301. doi: 10.1016/j.archger.2007.08.011.CrossRefGoogle ScholarPubMed
Teunisse, S. and Derix, M. M. (1997). The interview for deterioration in daily living activities in dementia: agreement between primary and secondary caregivers. International Psychogeriatrics, 9, 155162. doi: 10.1017/S1041610297004845.CrossRefGoogle ScholarPubMed
Toms, G. R., Quinn, C., Anderson, D. E. and Clare, L. (2015). Help yourself: perspectives on self-management from people with dementia and their caregivers. Qualitative Health Research, 25, 8798. doi: 10.1177/1049732314549604.CrossRefGoogle ScholarPubMed
Van der Roest, H. G. et al. (2009). What do community-dwelling people with dementia need? A survey of those who are known to care and welfare services. International Psychogeriatrics, 21, 949965. doi: 10.1017/S1041610209990147.CrossRefGoogle Scholar
Van der Roest, H. G., Meiland, F. J., Jonker, C. and Dröes, R. M. (2010). User evaluation of the DEMentia-specific digital interactive social chart (DEM-DISC). A pilot study among informal carers on its impact, user friendliness and, usefulness. Aging & Mental Health, 14, 461470. doi: 10.1080/13607860903311741.CrossRefGoogle ScholarPubMed
Vernooij-Dassen, M. and Jeon, Y. H. (2016). Social health and dementia: the power of human capabilities. International Psychogeriatric, 28, 701703. doi: 10.1017/S1041610216000260.CrossRefGoogle ScholarPubMed
Vernooij-Dassen, M., Moniz-Cook, E. and Jeon, Y. H. (2018). Social health in dementia care: harnessing an applied research agenda. International Psychogeriatrics, 30, 775778. doi: 10.1017/S1041610217002769.CrossRefGoogle ScholarPubMed
Vreugdenhil, A., Cannell, J., Davies, A. and Razay, G. (2012). A community-based exercise programme to improve functional ability in people with Alzheimer’s disease: a randomized controlled trial. Scandinavian Journal of Caring Sciences, 26, 1219. doi: 10.1111/j.1471-6712.2011.00895.x.CrossRefGoogle ScholarPubMed
Wenger, G. C. (1994). Support Networks of Older People: A Guide for Practitioners. Bangor: Centre for Social Policy Research and Development, University College of Wales.Google Scholar
Supplementary material: File

Mangiaracina et al. supplementary material

Appendix S1

Download Mangiaracina et al. supplementary material(File)
File 56.1 KB