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Risk assessment for people living with dementia: a systematic review

Published online by Cambridge University Press:  06 December 2023

Juanita Hoe*
Affiliation:
Geller Institute of Ageing and Memory, University of West London, London, UK School of Health Sciences, University of London, London, UK
Elena Profyri
Affiliation:
School of Health Sciences, University of London, London, UK
Charlotte Kemp
Affiliation:
School of Health Sciences, University of London, London, UK
Monica Manela
Affiliation:
UCL Division of Psychiatry, University College London, Maple House, London, UK
Lucy Webster
Affiliation:
UCL Division of Psychiatry, University College London, Maple House, London, UK Centre for Health Services Studies, University of Kent, Canterbury, Kent, UK
Justine Anthony
Affiliation:
School of Health Sciences, University of London, London, UK School of Sport, Exercise and Health Sciences, Loughborough University, Loughborough, Leicestershire, UK
Sergi Costafreda
Affiliation:
UCL Division of Psychiatry, University College London, Maple House, London, UK Camden, and Islington NHS Foundation Trust, St Pancras Hospital, London, UK
Frank Arrojo
Affiliation:
Alzheimer’s Society Research Network, Alzheimer’s Society, London, UK
Helen Souris
Affiliation:
Camden, and Islington NHS Foundation Trust, St Pancras Hospital, London, UK Dementia Clinical Network, NHS England and NHS Improvement (London Region, London, UK
Gill Livingston
Affiliation:
UCL Division of Psychiatry, University College London, Maple House, London, UK Camden, and Islington NHS Foundation Trust, St Pancras Hospital, London, UK
*
Correspondence should be addressed to: Juanita Hoe, Geller Institute of Ageing and Memory, University of West London, St Mary’s Road, Ealing, London, W5 5RF, UK. Email: juanita.hoe@uwl.ac.uk

Abstract

Objective:

This systematic review identified key components of risk assessment for people with dementia, examined attitudes toward risk identification and risk assessment, and appraised existing risk assessment tools.

Methods:

Systematic searches of five databases on two platforms (EBSCO, OVID) and gray literature databases (Open Grey, Base) were conducted. Studies were screened for inclusion based on predetermined eligibility criteria and quality assessed using the Mixed Methods Appraisal Tool. Findings were tabulated and synthesized using thematic synthesis.

Results:

Our review found people with dementia, their family carers, and healthcare professionals differed in how risk is conceptualized, with views being shaped by media perceptions, personal experiences, socio-cultural influences, dementia knowledge, and dementia severity. We found that mobilization (causing falls inside and getting lost outside) is the most frequently identified risk factor. Our findings show people with dementia are generally risk-tolerant, while healthcare professionals may adopt risk-averse approaches because of organizational requirements. We found factors that disrupt daily routines, living and caring arrangements, medication management, and unclear care pathways contribute toward adverse risk events. We discovered that most studies about risk and risk assessment scales did not consider insight of the person with dementia into risks although this is important for the impact of a risk. No risk instrument identified had sufficient evidence that it was useful.

Conclusion:

Accurate risk assessment and effective communication strategies that include the perspectives of people with dementia are needed to enable risk-tolerant practice. No risk instrument to date was shown to be widely acceptable and useful in practice.

Type
Review Article
Copyright
© The Author(s), 2023. Published by Cambridge University Press on behalf of International Psychogeriatric Association

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References

Adams, T. (2001). The social construction of risk by community psychiatric nurses and family carers for people with dementia. Health, Risk & Society, 3, 307319. https://doi.org/10.1080/13698570120079903.CrossRefGoogle Scholar
Alexander, C. M., Martyr, A., Savage, S. A., Morris, R. G. and Clare, L. (2021). Measuring awareness in people with dementia: results of a systematic scoping review. Journal of Geriatric Psychiatry and Neurology, 34, 335348. https://doi.org/10.1177/08919887209247.CrossRefGoogle ScholarPubMed
Ali, N. et al. (2016). Risk assessment of wandering behavior in mild dementia. International Journal of Geriatric Psychiatry, 31, 367374. https://doi.org/10.1002/gps.4336.CrossRefGoogle ScholarPubMed
Backhouse, T., Ruston, A., Killett, A., Ward, R., Rose-Hunt, J. and Mioshi, E. (2022). Risks and risk mitigation in homecare for people with dementia—A two-sided matter: a systematic review. Health & Social Care in the Community, 30, 20372056.CrossRefGoogle ScholarPubMed
Bamford, C. et al. (2021). Key components of post-diagnostic support for people with dementia and their carers: a qualitative study. PloS One, 16, e0260506. https://doi.org/10.1371/journal.pone.0260506.CrossRefGoogle ScholarPubMed
Bantry White, E. and Montgomery, P. (2016). Supporting people with dementia to walkabout safely outdoors: development of a structured model of assessment. Health & Social Care in the Community, 24, 473484. https://doi.org/10.1111/hsc.12226.CrossRefGoogle ScholarPubMed
Behrman, S., Wilkinson, P., Lloyd, H. and Vincent, C. (2017). Patient safety in community dementia services: what can we learn from the experiences of caregivers and healthcare professionals? Age and Ageing, 46, 518521. https://doi.org/10.1093/ageing/afw220.CrossRefGoogle ScholarPubMed
Benbow, S. M. and Kingston, P. (2017). Spontaneous concerns about risk and abuse reported by people with dementia and their carers. The Journal of Adult Protection, 19, 9299. https://doi.org/10.1108/JAP-12-2016-0030.CrossRefGoogle Scholar
Berry, B., Apesoa-Varano, E. C. and Gomez, Y. (2015). How family members manage risk around functional decline: the autonomy management process in households facing dementia. Social Science & Medicine, 130, 107114. https://doi.org/10.1016/j.socscimed.2015.02.014.CrossRefGoogle ScholarPubMed
Bodemer, N. and Gaissmaier, W. (2012). Risk communication in health. In: Roeser, S., Hillerbrand, R., Sandin, P. and Peterson, P. (Eds.), Handbook of risk theory: Epistemology, Decision Theory, Ethics, and Social Implications of Risk. vol. 1, Springer Netherlands.Google Scholar
Bourgeois, J. and Couturier, P. (2009). Safety at home for people with dementia: preliminary evaluation of situations-at-risk in a French geriatric memory clinic AGRICA View project SAFES Cohort Study View project. Psychologie & Neuropsychiatrie du Vieillissement, 7, 213224. https://doi.org/10.1684/pnv.2009.0174.Google Scholar
Carr, S. (2011). Enabling risk and ensuring safety: self-directed support and personal budgets. The Journal of Adult Protection, 13, 122136. https://doi.org/10.1108/14668201111160723.CrossRefGoogle Scholar
Choi, M.-H. et al. (2014). Extraction and analysis of risk elements for Korean homecare patients with senile dementia. The Journal of Behavioral Health Services & Research, 43, 116126. https://doi.org/10.1007/s11414-014-9429-4.CrossRefGoogle Scholar
Clarke, C. L. et al. (2010). Reframing risk management in dementia care through collaborative learning. Health & Social Care in the Community, 19, 2332. https://doi.org/10.1111/j.1365-2524.2010.00944.x.CrossRefGoogle ScholarPubMed
Clarke, C. and Mantle, R. (2016). Using risk management to promote person-centred dementia care. Nursing Standard (2014+), 30, 4146. https://doi.org/10.7748/ns.30.28.41.s47.CrossRefGoogle ScholarPubMed
Cott, C. A. and Tierney, M. C. (2013). Acceptable and unacceptable risk: balancing everyday risk by family members of older cognitively impaired adults who live alone. Health, Risk & Society, 15, 402415. https://doi.org/10.1080/13698575.2013.801936.CrossRefGoogle Scholar
Daly, R. L., Bunn, F. and Goodman, C. (2018). Shared decision-making for people living with dementia in extended care settings: a systematic review. BMJ Open, 8, e018977. https://doi.org/10.1136/bmjopen-2017-018977.CrossRefGoogle ScholarPubMed
Department of Health. (2005). Mental Capacity Act. London:: Stationery Office. Available at: https://www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpga_20050009_en.pdf last accessed 25 September 2023.Google Scholar
Department of Health. (2009). Living Well with Dementia: Aa National Dementia Strategy. London: Department of Health Publications. Available at: https://www.gov.uk/government/news/living-well-with-dementia-a-national-dementia-strategy last accessed 25 September 2022,Google Scholar
Department of Health. (2016). Prime Minister’s Challenge on Dementia 2020: Implementation Plan. London.: Department of Health Publications. Available at www.gov.uk/government/uploads/system/uploads/attachment_data/file/505568/dementia-implementation-plan.pdf last accessed 25 September 2022.Google Scholar
Dickins, M., Goeman, D., O’Keefe, F., Iliffe, S. and Pond, D. (2018). Understanding the conceptualization of risk in the context of community dementia care. Social Science & Medicine, 208, 7279. https://doi.org/10.1016/j.socscimed.2018.05.018.CrossRefGoogle ScholarPubMed
Evans, E. A., Perkins, E., Clarke, P., Haines, A., Baldwin, A. and Whittington, R. (2016). Care home manager attitudes to balancing risk and autonomy for residents with dementia. Aging & Mental Health, 22, 261269. https://doi.org/10.1080/13607863.2016.1244803.CrossRefGoogle ScholarPubMed
Evans, S. and Means, R. (2006). Perspectives on risk for older people with dementia in extra care housing in the UK: findings from a longitudinal study. International Journal on Dizability and Human Development, 5, 7782. https://doi.org/10.1515/IJDHD.2006.5.1.77.Google Scholar
Fetherstonhaugh, D., Tarzia, L., Bauer, M., Nay, R. and Beattie, E. (2016). “The red dress or the blue?” How do staff perceive that they support decision-making for people with dementia living in residential aged care facilities? Journal of Applied Gerontology, 35, 209226. https://doi.org/10.1177/0733464814531089.CrossRefGoogle ScholarPubMed
Fetherstonhaugh, D., Tarzia, L. and Nay, R. (2013). Being central to decision making means I am still here! The essence of decision making for people with dementia. Journal of Aging Studies, 27, 143150. https://doi.org/10.1016/j.jaging.2012.12.007.CrossRefGoogle Scholar
Gitlin, L., Schinfeld, S., Winter, L., Corcoran, M., Boyce, A. and Hauch, W. (2002). Evaluating home environments of persons with dementia: inter-rater reliability and validity of the Home Environmental Assessment Protocol (HEAP). Dizability and Rehabilitation, 24, 5971. https://doi.org/10.1080/09638280110066325.CrossRefGoogle Scholar
Higgins, J. P. et al. (Eds.) (2023). Cochrane Handbook for Systematic Reviews of Interventions version 6.4 (updated August 2023). Cochrane, 2023. Available from https://training.cochrane.org/handbook Google Scholar
Hong, Q. N. et al. (2018). The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers. Education for Information, 34, 285291. https://doi.org/10.3233/EFI-180221.CrossRefGoogle Scholar
Horvath, K. J. et al. (2005). Caregiver competence to prevent home injury to the care recipient with dementia. Rehabilitation Nursing, 30, 189196. https://doi.org/10.1002/j.2048-7940.2005.tb00109.x.CrossRefGoogle Scholar
Howard, R. et al. (2021). The effectiveness and cost-effectiveness of assistive technology and telecare for independent living in dementia: a randomised controlled trial. Age and Ageing, 50, 882890. https://doi.org/10.1093/ageing/afaa284.CrossRefGoogle ScholarPubMed
Kruse, C. S., Fohn, J., Umunnakwe, G., Patel, K. and Patel, S. (2020). Evaluating the facilitators, barriers, and medical outcomes commensurate with the use of assistive technology to support people with dementia: a systematic review literature. Healthcare, 8, 278. https://doi.org/10.3390/healthcare8030278.CrossRefGoogle ScholarPubMed
Lach, H. W., Thomas Reed, A., Smith, L. J. and Carr, D. B. (1995). Alzheimer’s disease: assessing safety problems in the home. Geriatric Nursing, 16, 160164. https://doi.org/10.1016/S0197-4572(05)80022-9.CrossRefGoogle ScholarPubMed
Lea, E. et al. (2014). Improving student nurses’ aged care understandings through a supported placement. International Nursing Review, 62, 2835. https://doi.org/10.1111/inr.12156.CrossRefGoogle Scholar
Lee, L. et al. (2019). Person-centred risk assessment framework: assessing and managing risk in older adults living with dementia. Neurodegenerative Disease Management, 9, 4757. https://doi.org/10.2217/nmt-2018-0031.CrossRefGoogle Scholar
Lorenz, K., Freddolino, P. P., Comas-Herrera, A., Knapp, M. and Damant, J. (2019). Technology-based tools and services for people with dementia and carers: mapping technology onto the dementia care pathway. Dementia, 18, 725741. https://doi.org/10.1177/1471301217691617.CrossRefGoogle ScholarPubMed
Lupton, D. (2013). Risk and emotion: towards an alternative theoretical perspective. Health, Risk & Society, 15, 634647. https://doi.org/10.1080/13698575.2013.848847.CrossRefGoogle Scholar
Manthorpe, J. and Moriarty, J. (2010). Nothing Ventured, Nothing Gained: Risk Guidance for People with Dementia. London: Department of Health. Available at: https://www.gov.uk/government/publications/nothing-ventured-nothing-gained-risk-guidance-for-people-with-dementia last accessed 25 September 2022).Google Scholar
Mapes, N. (2017). Think outside: positive risk-taking with people living with dementia. Working with Older People, 21, 157166. https://doi.org/10.1108/WWOP-03-2017-0007.CrossRefGoogle Scholar
McDermott, S. (2010). Professional judgements of risk and capacity in situations of self-neglect among older people. Ageing and Society, 30, 10551072. https://doi.org/10.1017/S0144686X10000139.CrossRefGoogle Scholar
Mitchell, W. and Glendinning, C. (2008). Risk and adult social care: identification, management and new policies. What does UK research evidence tell us? Health, Risk & Society, 10, 297315. https://doi.org/10.1080/13698570802163677.CrossRefGoogle Scholar
Moher, D. et al. (2015). Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement. Systematic Reviews, 4, 19. https://doi.org/10.1186/2046-4053-4-1.CrossRefGoogle ScholarPubMed
Moncada, L. V. V. and Mire, L. G. (2017). Preventing falls in older persons. American Family Physician, 96, 240247,https://www.aafp.org/pubs/afp/issues/2017/0815/p240.html last accessed 25 September 2022.Google ScholarPubMed
Morgan, S. and Andrews, N. (2016). Positive risk-taking: from rhetoric to reality. The Journal of Mental Health Training, Education and Practice, 11, 122132.CrossRefGoogle Scholar
Morgan, S. and Williamson, S. (2014). How can ‘positive risk-taking’ help build dementia-friendly communities? Available at: https://policycommons.net/artifacts/1863098/how-can-positive-risk-taking-help-build-dementia-friendly-communities/2611427/ last accessed 25 September 2022.Google Scholar
Morgan, D. G., Stewart, N. J., D’arcy, K. C. and Werezak, L. J. (2004). Evaluating rural nursing home environments: dementia special care units versus integrated facilities. Aging & Mental Health, 8, 256265. https://doi.org/10.1080/1360786041000166796.CrossRefGoogle ScholarPubMed
National Institute for Health and Care Excellence (NICE) (2013). Falls in Older People: Assessing Risk and Prevention. Clinical Guideline [CG161] NICE. https://www.nice.org.uk/guidance/cg161 last accessed 25 September 2022.Google Scholar
Ouzzani, M., Hammady, H., Fedorowicz, Z. and Elmagarmid, A. (2016). Rayyan—a web and mobile app for systematic reviews. Systematic Reviews, 5, 110. https://doi.org/10.1186/s13643-016-0384-4.CrossRefGoogle ScholarPubMed
Page, M. J. et al. (2021). The PRISMA. 2020 statement: an updated guideline for reporting systematic reviews. Systematic Reviews, 10, 111. https://doi.org/10.1016/j.ijsu.2021.105906.CrossRefGoogle ScholarPubMed
Park, H. J., Lee, N. G. and Kang, T. W. (2020). Fall-related cognition, motor function, functional ability, and depression measures in older adults with dementia. NeuroRehabilitation, 47, 487494. https://doi.org/10.3233/NRE-203249.CrossRefGoogle ScholarPubMed
Pel-Littel, R. E. et al. (2021). Barriers and facilitators for shared decision making in older patients with multiple chronic conditions: a systematic review. BMC Geriatrics, 21, 114. https://doi.org/10.1186/s12877-021-02050-y.CrossRefGoogle ScholarPubMed
Pickering, C. E. Z., Yefimova, M., Maxwell, C., Puga, F. and Sullivan, T. (2019). Daily context for abusive and neglectful behavior in family caregiving for dementia. The Gerontologist, 60, 483493. https://doi.org/10.1093/geront/gnz110.CrossRefGoogle Scholar
Popay, J. et al. (2006). Guidance on the conduct of narrative synthesis in systematic reviews. A Pproduct from the ESRC Mmethods Pprogramme Vversion, 1. Available at: https://citeseerx.ist.psu.edu/document?repid=rep1&type=pdf&doi=ed8b23836338f6fdea0cc55e161b0fc5805f9e27 last accessed 25 September 2022.Google Scholar
Poulin de Courval, L. P. et al. (2006). Reliability and validity of the Safety Assessment Scale for people with dementia living at home. Canadian Journal of Occupational Therapy, 73, 6775. https://doi.org/10.1177/000841740607300201.CrossRefGoogle Scholar
Prince, M. J., Wimo, A., Guerchet, M. M., Ali, G. C., Wu, Y. T. and Prina, M. (2015). World Alzheimer Report 2015 – The Global Impact of Dementia: An Analysis of Prevalence, Incidence, Cost and Trends. London: Alzheimer’s Disease International. Available at: http://www.alz.co.uk/research/world-report-2015 last accessed 25 September 2022.Google Scholar
Prince, M., et al. (2014). Dementia UK: update (Second edition) [Research Report], King’s College London. Available at: https://hal.science/hal-03516999 last accessed 29 October 2022.Google Scholar
Rapaport, P. et al. (2020). I just keep thinking that I don’t want to rely on people., a qualitative study of how people living with dementia achieve and maintain independence at home: stakeholder perspectives. BMC Geriatrics, 20, 111. https://doi.org/10.1186/s12877-019-1406-6.CrossRefGoogle ScholarPubMed
Ruston, A. and Backhouse, T. (2022). Caring for people with dementia in their own homes: homecare workers’ experiences of tolerating and mitigating risk. Ageing and Society, 117. https://doi.org/10.1017/S0144686X22000575.CrossRefGoogle Scholar
Sandberg, L., Rosenberg, L., Sandman, P. O. and Borell, L. (2015). Risks in situations that are experienced as unfamiliar and confusing – the perspective of persons with dementia. Dementia, 16, 471485. https://doi.org/10.1177/1471301215603836.CrossRefGoogle ScholarPubMed
Stevenson, M., McDowell, M. E. and Taylor, B. J. (2018). Concepts for communication about risk in dementia care: a review of the literature. Dementia, 17, 359390.CrossRefGoogle Scholar
Stevenson, M., Savage, B. and Taylor, B. J. (2019). Perception and communication of risk in decision making by persons with dementia. Dementia, 18, 11081127. https://doi.org/10.1177/1471301217704119.CrossRefGoogle ScholarPubMed
Stevenson, M. and Taylor, B. J. (2018). Risk communication in dementia care: family perspectives. Journal of Risk Research, 21, 692709. https://doi.org/10.1080/13669877.2016.1235604.CrossRefGoogle Scholar
Stevenson, M. and Taylor, B. J. (2017). Risk communication in dementia care: professional perspectives on consequences, likelihood, words and numbers. The British Journal of Social Work, 47, 19401958. https://doi.org/10.1093/bjsw/bcw161.CrossRefGoogle Scholar
Struckmeyer, L. R., Pickens, N., Brown, D. and Mitchell, K. (2020). Home environmental assessment protocol-revised initial psychometrics: a pilot study. OTJR: Occupation, Participation and Health, 40, 175182. https://doi.org/10.1177/1539449220912186.Google ScholarPubMed
Tagai, K., Nagata, T., Shinagawa, S. and Shigeta, M. (2020). Anosognosia in patients with Alzheimer’s disease: current perspectives. Psychogeriatrics, 20, 345352. https://doi.org/10.1111/psyg.12507.CrossRefGoogle ScholarPubMed
Taylor, B. J. (2006). Risk management paradigms in health and social services for professional decision making on the long-term care of older people. British Journal of Social Work, 36, 14111429. https://doi.org/10.1093/bjsw/bch406.CrossRefGoogle Scholar
Taylor, B. J., Stevenson, M. and McDowell, M. (2017). Communicating risk in dementia care: survey of health and social care professionals. Health & Social Care in the Community, 26, 291303. https://doi.org/10.1111/hsc.12519.Google ScholarPubMed
Thomas, J. and Harden, A. (2008). Methods for the thematic synthesis of qualitative research in systematic reviews. BMC Medical Research Methodology, 8, 45. https://doi.org/10.1186/1471-2288-8-45.CrossRefGoogle ScholarPubMed
Tuijt, R. et al. (2021). Exploring how triads of people living with dementia, carers and health care professionals function in dementia health care: a systematic qualitative review and thematic synthesis. Dementia, 20, 10801104. https://doi.org/10.1177/1471301220915068.CrossRefGoogle ScholarPubMed
Wied, T. S., Knebel, M., Tesky, V. A. and Haberstroh, J. (2019). The human right to make one’s own choices: implications for supported decision-making in persons with dementia. European Psychologist, 24, 146158. https://doi.org/10.1027/1016-9040/a000372.CrossRefGoogle Scholar
Wittenberg, R. et al. (2019). The costs of dementia in England. International Journal of Geriatric Psychiatry, 34, 10951103. https://doi.org/10.1002/gps.5113.CrossRefGoogle ScholarPubMed
World Health Organization (WHO). (2021). Global status report on the public health response to dementia. Geneva: World Health Organization. Available at: https://www.who.int/publications/i/item/9789240033245 last accessed 18 October 2022.Google Scholar
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