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Cognitive impairment and its consequences in everyday life: experiences of people with mild cognitive impairment or mild dementia and their relatives

  • Maria M. Johansson (a1), Jan Marcusson (a1) and Ewa Wressle (a1)



The aim of this study was to explore experiences of cognitive impairment, its consequences in everyday life and need for support in people with mild cognitive impairment (MCI) or mild dementia and their relatives.


A qualitative approach with an explorative design with interviews was chosen. The participants included five people with MCI and eight people with mild dementia and their relatives. All participants were recruited at a geriatric memory clinic in Sweden. The Grounded Theory method was used.


The following categories emerged: noticing cognitive changes; changed activity patterns; coping strategies; uncertainty about own ability and environmental reactions; support in everyday life; support from the healthcare system; consequences in everyday life for relatives; and support for relatives. The main findings were that people with MCI and dementia experienced cognitive changes that could be burdensome and changed activity patterns. Most of them, however, considered themselves capable of coping on their own. The relatives noticed cognitive changes and activity disruptions to a greater extent and tried to be supportive in everyday life. Degree of awareness varied and lack of awareness could lead to many problems in everyday life.


Perceived cognitive impairment and its consequences in everyday life were individual and differed among people with MCI or dementia and their relatives. Thus, healthcare professionals must listen to both people with cognitive impairment and their relatives for optimal individual care planning. Support such as education groups and day care could be more tailored towards the early stages of dementia.


Corresponding author

Correspondence should be addressed to: Maria M. Johansson, Occupational Therapist, Department of Geriatric Medicine, University Hospital, SE-581 85 Linköping, Sweden. Phone: +46 10 103 80 30; Fax: +46 10 103 41 41. Email:


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Aggarwal, N., Vass, A. A., Minardi, H. A., Ward, R., Garfield, C. and Cybyk, B. (2003). People with dementia and their relatives: personal experiences of Alzheimer's and of the provision of care. Journal of Psychiatric and Mental Health Nursing, 10, 187197. doi: 10.1046/j.1365-2850.2003.00550.x.
APA (Ed.) (2004). Diagnostic and Statistical Manual of Mental Disorders, 4th edn, DSM-IV. Washington, DC: American Psychiatric Association.
Avlund, K. and Fromholt, P. (1998). Instrumental activities of daily living: the relationships to self-rated memory and cognitive performance among 75-year-old men and women. Scandinavian Journal of Occupational Therapy, 5, 93100.
Barberger-Gateau, P., Commenges, D., Gagnon, M., Letenneur, L., Sauvel, C., and Dartigues, J. F. (1992). Instrumental activities of daily living as a screening tool for cognitive impairment and dementia in elderly community dwellers. Journal of the American Geriatrics Society, 40, 11291134.
Barberger-Gateau, P., Fabrigoule, C., Helmer, C., Rouch, I. and Dartigues, J. F. (1999). Functional impairment in instrumental activities of daily living: an early clinical sign of dementia? Journal of the American Geriatrics Society, 47, 456462.
Brataas, H. V., Bjugan, H., Wille, T. and Hellzen, O. (2010). Experiences of day care and collaboration among people with mild dementia. Journal of Clinical Nursing, 19, 28392848.
Chien, L. Y. et al. (2011). Caregiver support groups in patients with dementia: a meta-analysis. International Journal of Geriatric Psychiatry, 26, 10891098.
Chung, P. Y. F., Ellis-Hill, C. and Coleman, P. G. (2008). Carers perspectives on the activity patterns of people with dementia. Dementia, 7, 359381.
De Vriendt, P., Gorus, E., Cornelis, E., Velghe, A., Petrovic, M. and Mets, T. (2012). The process of decline in advanced activities of daily living: a qualitative explorative study in mild cognitive impairment. International Psychogeriatrics, 24, 974986. doi: 10.1007/s12603-012-0381-9.
Delva, F., Edjolo, A., Peres, K., Berr, C., Barberger-Gateau, P. and Dartigues, J. F. (2014). Hierarchical structure of the activities of daily living scale in dementia. The Journal of Nutrition, Health & Aging, 18, 698704. doi: 10.1007/s12603-014-0028-0.
Frank, L. et al. (2006). Impact of cognitive impairment on mild dementia patients and mild cognitive impairment patients and their informants. International Psychogeriatrics, 18, 151162. doi: 10.1017/S1041610205002450.
Gústafsdóttir, M. (2014). The family's experience of sharing the care of a person with dementia with the services in specialized day-care units. Dementia and Geriatric Cognitive Disorders Extra, 4, 344354.
Katz, S., Ford, A. B., Moskowitz, R. B., Jackson, B. A. and Jaffe, M. W. (1963). Studies of illness in the aged, the index of ADL: a standardized measure of biological and psychosocial function. JAMA, 185, 914919. doi: 10.1001/jama.1963.03060120024016.
Larsson, K. and Thorslund, M. (2006). Old people's health. Scandinavian Journal of Public Health, 34 (Suppl. 67), 185198.
Lawton, M. P. and Brody, E. M. (1969). Assessment of older people: self-maintaining and instrumental activities of daily living. Gerontologist, 9, 179186.
Lincoln, Y. and Guba, E. (1985). Naturalistic Inquiry. Newbury Park, CA: Sage Publications.
Mårdh, S., Karlsson, T. and Marcusson, J. (2013). Aspects of awareness in patients with Alzheimer's disease. International Psychogeriatrics, 25, 11671179. doi: 10.1017/S1041610212002335.
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.
Nay, R., Bauer, M., Fetherstonhaugh, D., Moyle, W., Tarzia, L. and McAuliffe, L. (2014). Social participation and family carers of people living with dementia in Australia. Health & Social Care in the Community, [Epub ahead of print]. doi: 10.1111/hsc.12163.
Nygård, L. and Öhman, A. (2002). Managing changes in everyday occupations: the experience of persons with Alzheimer's disease. Occupation, Participation & Health, 22, 7081.
Öhman, A., Josephsson, S. and Nygård, L. (2008). Awareness through interaction in everyday occupations: experiences of people with Alzheimer's disease. Scandinavian Journal of Occupational Therapy, 15, 4351.
O’Sullivan, G., Hocking, C. and Spence, D. (2014). Dementia: the need for attitudinal change. Dementia, 13, 483497. doi: 10.1177/1471301213478241.
Pedrosa, H. et al. (2010). Functional evaluation distinguishes MCI patients from healthy elderly people —-The ADCS/MCI/ADL scale. Journal of Nutrition, Health & Aging, 14, 703709. doi: 10.1007/s12603-010-0102-1.
Petersen, R. C., Caracciolo, B., Brayne, C., Gauthier, S., Jelic, V. and Fratiglioni, L. (2014). Mild cognitive impairment: a concept in evolution. Journal of Internal Medicine, 275, 214228.
Qiu, C., Kivipelto, M. and von Strauss, E. (2009). Epidemiology of Alzheimer's disease:occurrence, determinants, and strategies toward intervention. Dialogues in Clinical Neuroscience, 11, 111128.
Reisberg, B., Ferris, S. H., De Leon, M. and Crook, T. (1982). The global deterioration scale for assessment of primary degererative dementia. American Journal of Psychiatry, 139, 11361139.
SBU (2006). Demenssjukdomar (Dementias). SBU Report. Available at:
Strauss, A. and Corbin, J. (1990). Basics of Qualitative Research: Grounded Theory Procedures and Techniques. Newbury Park, CA: Sage Publications.
Wadley, V. G., Okonkwo, O., Crowe, M. and Ross-Meadows, L. A. (2008). Mild cognitive impairment and everyday function: evidence of reduced speed in performing instrumental activities of daily living. The American Journal of Geriatric Psychiatry, 16, 416424.
Winblad, B. et al. (2004). Mild cognitive impairment – beyond controversies, towards a consensus: report of the international working group on mild cognitive impairment. Journal of Internal Medicine, 256, 240246.
Yeh, Y.-C., Lin, K.-N., Chen, W.-T., Lin, C.-Y., Chen, T.-B. and Wang, P.-N. (2011). Functional disability profiles in amnestic mild cognitive impairment. Dementia and Geriatric Cognitive Disorders, 31, 225232.



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