Functioning and Disability in Community-Living People with Perceived Cognitive Impairment or Dementia: A Mixed Methods Study using the World Health Organization Disability Assessment Schedule
Keywords:community living, dementia, functioning and disability, ICF linking rules, individual interviews, perceived cognitive impairment, WHODAS 2.0
Objective: To explore how community-living people with perceived cognitive impairment or dementia and their next-of-kin perceive functioning and disability in major life domains.
Methods: Individual interviews guided by the World Health Organization Disability Assessment Schedule (WHODAS 2.0) were conducted with 26 people with perceived cognitive impairment or dementia (age range 38–87 years) and 26 next-of-kin. Qualitative content analysis- and International Classification of Functioning, Disability, and Health (ICF) linking methods were used to analyse the transcripts. The perceived degree of disability in daily functioning was calculated and compared between people with perceived cognitive impairment or dementia and next-of-kin, using a Mann–Whitney U test.
Results: A total of 38 of 47 (81%) established ICF categories corresponding to WHODAS items and 38 additional International Classification of Functioning, Disability, and Health (ICF) categories describing participants perceived cognitive and physical impairments, activity limitations and participation restrictions in interaction with the environmental factors were confirmed from the transcripts. The perceived disability of people with perceived cognitive impairment or dementia was scored higher by next-of-kin (48%) than by people with perceived cognitive impairment or dementia (16%, p < 0.0001).
Conclusion: Interviews provided a comprehensive picture of participants’ perceived activity limitations and participation restrictions in the life domains cognition, mobility, self-care, getting along, life activities, and participation. For a better understanding of the impact of cognitive impairment on people’s daily lives, inclusion of the perspective of the next-of-kin and the factors that hinder or facilitate daily living in the community setting is necessary.
Dementia is one of the leading causes of disability in Sweden, and most of the people with dementia and those with perceived cognitive impairment, i.e. persons not diagnosed with dementia, live at home. A comprehensive understanding of their needs is required in order to develop dementia care in the community. The aim of this study was to explore what kind of difficulties community-living people with perceived cognitive impairment or dementia and their next-of-kin perceive in their daily lives. Twenty-six people with perceived cognitive impairment or dementia and their next-of-kin were interviewed in their homes, and the perceived degree of difficulties was compared between the 2 groups. The interviews provided a broad picture of how people with perceived cognitive impairment or dementia and nextof-kin perceive difficulties in their daily lives. The nextof-kin perceived the difficulties as greater than did the persons with dementia. For a better understanding of the impact of dementia on people’s daily lives, inclusion of the perspective of the next-of-kin and the factors that hinder or facilitate daily living in the community setting are necessary.
Prince M, Ali GC, Guerchet M, Prina AM, Albanese E, Wu YT. Recent global trends in the prevalence and incidence of dementia, and survival with dementia. Alzheimers Res Ther 2016; 8: 2-13.
https://doi.org/10.1186/s13195-016-0188-8 DOI: https://doi.org/10.1186/s13195-016-0188-8
Alzheimer's Dement. 2021 Alzheimer's disease facts and figures. Alzheimer's Dement 2021; 17: 327-406.
https://doi.org/10.1002/alz.12328 DOI: https://doi.org/10.1002/alz.12328
Huang SW, Chang KH, Escorpizo R, Chi WC, Yen CF, Liao HF, et.al. Functioning and disability analysis by using WHO Disability Assessment Schedule 2.0 in older adults' Taiwanese patients with dementia. Disabil Rehabil 2016; 38: 1652-1663.
https://doi.org/10.3109/09638288.2015.1107636 DOI: https://doi.org/10.3109/09638288.2015.1107636
Lee HH, Hong CT, Wu D, Chi WC, Yen CF, Liao HF, et al. Association between ambulatory status and functional disability in elderly people with dementia. Int J Environ Res Public Health 2019; 16: 6-10.
https://doi.org/10.3390/ijerph16122168 DOI: https://doi.org/10.3390/ijerph16122168
World Health Organization (WHO). Global action plan on the public health response to dementia 2017-2025. Geneva: WHO; 2017; Licence: CC BY-NC-SA 3.0 IGO.
Marengoni A, Akugizibwe R, Vetrano DL, Roso‑Llorach A, Onder G, Welmer AG, et al. Patterns of multimorbidity and risk of disability in community‑dwelling older persons. Aging Clin Exp Res 2021; 33:457-462.
https://doi.org/10.1007/s40520-020-01773-z DOI: https://doi.org/10.1007/s40520-020-01773-z
Lövenmark A, Summer Meranius M, Hammar L. That Mr. Alzheimer you never know what he's up to, but what about me? A discourse analysis of how Swedish spouse caregivers can make their subject positions understandable and meaningful. Int J Qual Stud Health Well-being 2018; 13: 1-12.
https://doi.org/10.1080/17482631.2018.1554025 DOI: https://doi.org/10.1080/17482631.2018.1554025
Kjällman A, Norbergh KG, Hellzen. What it means to be an adult child of a person with dementia. Int J Qualitative Stud Health Well-being 2013; 8: 1-8.
https://doi.org/10.3402/qhw.v8i0.21676 DOI: https://doi.org/10.3402/qhw.v8i0.21676
Kjällman Alm A, Hellzén O, Norbergh K. Experiences of long-term ongoing structured support in early stage of dementia - a case study. Int J of Older People Nurs 2014; 9: 289-297.
https://doi.org/10.1111/opn.12034 DOI: https://doi.org/10.1111/opn.12034
Wimo A, Jönsson L, Fratiglioni L, Sandman PO, Gustavsson A, Sköldunger A, et al. The societal costs of dementia in Sweden 2012 - relevance and methodological challenges in valuing informal care. Alzheimers Res Ther 2016; 8: 1-11.
https://doi.org/10.1186/s13195-016-0215-9 DOI: https://doi.org/10.1186/s13195-016-0215-9
National Board of Health and Welfare. National Guidelines for care in cases of dementia 2017. The National Board of Health and Welfare 2017. Available from: http://www.socialstyrelsen.se (in Swedish)
Lo RY. The borderline between normal ageing and dementia. Tzu Chi Med J 2017; 29: 65-71.
https://doi.org/10.4103/tcmj.tcmj_18_17 DOI: https://doi.org/10.4103/tcmj.tcmj_18_17
Chenoweth L, Stein-Parbury J, Lapkin S, Wang YA, Liu X, Williams A. Effects of person-centred care at the organisational-level for people with dementia. PLoS ONE 2019; 14: 1-21.
https://doi.org/10.1371/journal.pone.0212686 DOI: https://doi.org/10.1371/journal.pone.0212686
Prince M, Comas-Herrera A, Knapp M, Guerchet M, Karagiannidou M. The World Alzheimer Report 2016. Improving healthcare for people living with dementia: coverage, quality and costs now and in the future. London: Alzheimer's Disease International (ADI), 2016.
Rodríguez-Gómez O, Rodrigo A, Iradier F, Santos-Santos MA, Hundemer H, Ciudin A, et.al. The MOPEAD project: advancing patient engagement for the detection of hidden undiagnosed cases of Alzheimer's disease in the community. Alzheimers Dement 2019; 15: 828-839.
https://doi.org/10.1016/j.jalz.2019.02.003 DOI: https://doi.org/10.1016/j.jalz.2019.02.003
Gove D, Diaz-Ponce A, Georges J, Moniz-Cook E, Mountain G, Chattat R, et al. Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement). Aging Ment Health 2018; 22: 723-729.
https://doi.org/10.1080/13607863.2017.1317334 DOI: https://doi.org/10.1080/13607863.2017.1317334
World Health Organization (WHO). International Classification of Functioning Disability and Health (ICF). Geneva: WHO; 2001.
National Board of Health and Welfare. The National Board of Health and Welfare recommends the use of the ICF. National Board of Health and Welfare 2019. Available (in Swedish) from: https://www.socialstyrelsen.se/utveckla-verksamhet/e-halsa/klassificering-och-koder/icf
Stucki G, Rubinelli S, Bickenbach J. We need an operationalisation, not a definition of health. Disabil Rehabil 2018; 16:1-3.
https://doi.org/10.1080/09638288.2018.1503730 DOI: https://doi.org/10.1080/09638288.2018.1503730
Üstün TB, Chatterji S, Kostanjsek N, Rehm J, Kennedy C, Epping-Jordan J, et al. Developing the World Health Organization Disability Assessment Schedule 2.0 in collaboration with WHO/NIH Joint Project. Bull World Health Organ 2010; 88: 815-823.
https://doi.org/10.2471/BLT.09.067231 DOI: https://doi.org/10.2471/BLT.09.067231
Üstün TB, Kostanjsek N, Chatterji S, Rehm J. Measuring Health and Disability Manual for WHO Disability Assessment Schedule WHODAS 2.0. Geneva: World Health Organization; 2010.
Federici S, Bracalenti M, Meloni F, Luciano JV. World Health Organization disability assessment schedule 2.0: an international systematic review. Disabil Rehabil 2017; 39: 2347-2380.
https://doi.org/10.1080/09638288.2016.1223177 DOI: https://doi.org/10.1080/09638288.2016.1223177
Saltychev M, Katajapuu N, Bärlund E, Laimi K. Psychometric properties of 12-item self-administered World Health Organization disability assessment schedule 2.0 (WHODAS 2.0) among general population and people with non-acute physical causes of disability - systematic review. Disabil Rehabil 2019; 23: 1-6.
https://doi.org/10.1080/09638288.2019.1643416 DOI: https://doi.org/10.1080/09638288.2019.1643416
Beuscher L, Grando VT. Challenges in conducting qualitative research with persons with dementia. Res Gerontol Nurs 2009; 2: 6-11.
https://doi.org/10.3928/19404921-20090101-04 DOI: https://doi.org/10.3928/19404921-20090101-04
Folstein MF, Folstein, SE, McHugh, PR. Mini-mental state. A practical method for grading the cognitive state of patients for the clinician. J Psychiatr Res 1975; 12: 189-198.
https://doi.org/10.1016/0022-3956(75)90026-6 DOI: https://doi.org/10.1016/0022-3956(75)90026-6
Tuokko H, Hadjistavropoulos T, Miller JA, Beattie BL. The clock test: a sensitive measure to differentiate normal elderly from Alzheimer's disease. J Am Geriatr Soc 1992; 40: 579-584.
https://doi.org/10.1111/j.1532-5415.1992.tb02106.x DOI: https://doi.org/10.1111/j.1532-5415.1992.tb02106.x
Lincoln YS, Guba EG. Naturalistic inquiry. California: Sage Publications; 1985.
https://doi.org/10.1016/0147-1767(85)90062-8 DOI: https://doi.org/10.1016/0147-1767(85)90062-8
Elo S, Kääriäinen M, Kanste O, Pölkki T, Utriainen K, Kyngäs H. Qualitative content analysis. A focus on trustworthiness. SAGE Open. 2014; 4: 1-10.
https://doi.org/10.1177/2158244014522633 DOI: https://doi.org/10.1177/2158244014522633
Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today 2004; 24: 105-112.
https://doi.org/10.1016/j.nedt.2003.10.001 DOI: https://doi.org/10.1016/j.nedt.2003.10.001
Cieza A, Fayed N, Bickenbach J and Prodinger B. Refinements of the ICF Linking rules to strengthen their potential for establishing comparability of health information. Disabil Rehabil 2019; 41: 574-583.
https://doi.org/10.3109/09638288.2016.1145258 DOI: https://doi.org/10.3109/09638288.2016.1145258
National Board of Health and Welfare. 32-item instrument scoring sheet, domain-weighted scoring calculation. National Board of Health and Welfare. Available from; http://www.socialstyrelsen.se (in Swedish)
Moser A, Korstjens I. Series: Practical guidance to qualitative research. Part 3: Sampling, data collection and analysis. Eur J Gen Pract 2018; 24: 9-18.
https://doi.org/10.1080/13814788.2017.1375091 DOI: https://doi.org/10.1080/13814788.2017.1375091
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care 2007; 19: 349-357.
https://doi.org/10.1093/intqhc/mzm042 DOI: https://doi.org/10.1093/intqhc/mzm042
Hartman YAW, Karssemejer EGA, van Diepen LAM, Olde Rikkert MGM, Thjissen DHJ. Dementia patients are more sedentary and less physically active than age- and sex-matched cognitively healthy older adults. Dement Geriatr Cogn Disord 2018; 46: 81-89.
https://doi.org/10.1159/000491995 DOI: https://doi.org/10.1159/000491995
Tornero-Quiñones I, Sáez-Padilla J, Díaz AE, Robles MTA, Robles AS. Functional ability, frailty and risk of falls in the elderly: relations with autonomy in daily living. Int J Environ Res Public Health 2020; 17: 1-12.
https://doi.org/10.3390/ijerph17031006 DOI: https://doi.org/10.3390/ijerph17031006
Banerjee S, Wittenberg R. Clinical and cost effectiveness of services for early diagnosis and intervention in dementia. Int J Geriatr Psychiatry 2009; 24: 748-754.
https://doi.org/10.1002/gps.2191 DOI: https://doi.org/10.1002/gps.2191
Korstjens I, Mosner A. Series: Practical guidance to qualitative research. Part 4: Trustworthiness and publishing. Eur J Gen Pract 2018; 24: 120-124.
https://doi.org/10.1080/13814788.2017.1375092 DOI: https://doi.org/10.1080/13814788.2017.1375092
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