Hostname: page-component-cd9895bd7-mkpzs Total loading time: 0 Render date: 2024-12-25T17:05:01.916Z Has data issue: false hasContentIssue false
  • English
  • Français

Feeling useful and engaged in daily life: exploring the experiences of people with young-onset dementia

Published online by Cambridge University Press:  13 July 2017

Deliane van Vliet ,
Anke Persoon ,
Christian Bakker ,
Raymond T.C.M. Koopmans ,
Marjolein E. de Vugt ,
Annemiek Bielderman  and
Debby L. Gerritsen
Deliane van Vliet
Affiliation:
Department of Primary and Community Care: Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Medical Centre Nijmegen, the Netherlands Radboudumc Alzheimer Centre Nijmegen, the Netherlands
Anke Persoon
Affiliation:
Department of Primary and Community Care: Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Medical Centre Nijmegen, the Netherlands Radboudumc Alzheimer Centre Nijmegen, the Netherlands
Christian Bakker
Affiliation:
Department of Primary and Community Care: Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Medical Centre Nijmegen, the Netherlands Radboudumc Alzheimer Centre Nijmegen, the Netherlands Florence, Mariahoeve, Centre for Specialized Care in Young-Onset Dementia, Den Haag, the Netherlands
Raymond T.C.M. Koopmans
Affiliation:
Department of Primary and Community Care: Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Medical Centre Nijmegen, the Netherlands Radboudumc Alzheimer Centre Nijmegen, the Netherlands Joachim en Anna, Centre for Specialized Geriatric Care, Nijmegen, the Netherlands
Marjolein E. de Vugt
Affiliation:
School for Mental Health and Neuroscience, Alzheimer Centre Limburg, Maastricht University Medical Centre, Maastricht, the Netherlands
Annemiek Bielderman
Affiliation:
Department of Primary and Community Care: Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Medical Centre Nijmegen, the Netherlands Radboudumc Alzheimer Centre Nijmegen, the Netherlands
Debby L. Gerritsen*
Affiliation:
Department of Primary and Community Care: Centre for Family Medicine, Geriatric Care and Public Health, Radboud University Medical Centre Nijmegen, the Netherlands Radboudumc Alzheimer Centre Nijmegen, the Netherlands Joachim en Anna, Centre for Specialized Geriatric Care, Nijmegen, the Netherlands
*
Correspondence should be addressed to: Debby Gerritsen, Department of Primary and Community Care, Radboud University Medical Centre Nijmegen, P.O. Box 9101, 117 ELG, 6500 HB, Nijmegen, the Netherlands. Phone: +31 24 361 9588. Email: Debby.Gerritsen@radboudumc.nl.
Get access

Abstract

Background:

To explore the aspects of daily life that give people with young-onset dementia (YOD) a sense of usefulness.

Methods:

Eighteen people with YOD and 21 informal caregivers participated in this qualitative study. Participants were recruited from specialized day-care centers for people with YOD in the Netherlands. Four focus groups were conducted with people with YOD, and four with informal caregivers. Focus groups were audio-recorded, transcribed, and analyzed using inductive content analysis.

Results:

Four themes emerged from the analysis: (1) staying engaged, (2) loss in daily life, (3) coping and adaptation, and (4) external support. Staying engaged in activities that provide a sense of usefulness or participating in leisure and recreational activities as much as possible in daily life emerged as the key theme. Retaining a sense of usefulness was considered both important and possible by having social roles or participating in functional activities. The importance of activities providing a sense of usefulness seemed to decrease over time, while the need for pleasant activities seemed to increase. Experienced loss, coping, adaptation, and available external support are important parts of the context in which the person with YOD tries to engage in daily life as much as possible. Active coping styles and external support appear to play a facilitating role in staying engaged.

Conclusions:

It is important for people with YOD to have the opportunity to feel useful; especially in the early stages of the condition. Caregivers should be educated in ways to enhance a sense of usefulness and engagement in daily life for people with YOD.

Keywords

qualitative analysissense of usefulnessengagementactivitiesfocus groups
Type
Research Article
Information
International Psychogeriatrics , Volume 29 , Issue 11 , November 2017 , pp. 1889 - 1898
Copyright
Copyright © International Psychogeriatric Association 2017 

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

Bakker, C. et al. (2014a). Unmet needs and health-related quality of life in young-onset dementia. American Journal of Geriatric Psychiatry, 22, 1121–1130.Google Scholar
Bakker, C. et al. (2014b). The relationship between unmet care needs in young-onset dementia and the course of neuropsychiatric symptoms: a two-year follow-up study. International Psychogeriatrics, 26, 1991–2000.Google Scholar
Beattie, A., Daker-White, G., Gilliard, J. and Means, R. (2004). ‘How can they tell?’ A qualitative study of the views of younger people about their dementia and dementia care services. Health & Social Care in the Community, 12, 359–368.Google Scholar
Byrne-Davis, L. M., Bennett, P. D. and Wilcock, G. K. (2006). How are quality of life ratings made? Toward a model of quality of life in people with dementia. Quality of Life Research, 15, 855–865.CrossRefGoogle Scholar
Clemerson, G., Walsh, S. and Isaac, C. (2013). Towards living well with young onset dementia: an exploration of coping from the perspective of those diagnosed. Dementia (London), 13, 451–466.Google Scholar
de Vugt, M. E. et al. (2003). Behavioural disturbances in dementia patients and quality of the marital relationship. International Journal of Geriatric Psychiatry, 18, 149–154.Google Scholar
de Vugt, M. E. et al. (2004). Do caregiver management strategies influence patient behaviour in dementia?. International Journal of Geriatric Psychiatry, 19, 85–92.Google Scholar
Dröes, R. M. (2007). Insight in coping with dementia: listening to the voice of those who suffer from it. Aging & Mental Health, 11, 115–118.Google Scholar
Dutch Quality Institute for Health Care (2004). Guidelines for conducting focus groups. Utrecht: CBO.Google Scholar
Elo, S. and Kyngas, H. (2008). The qualitative content analysis process. Journal of Advanced Nursing, 62, 107–115.Google Scholar
Endacott, R. (2008). Clinical research 4: qualitative data collection and analysis. International Emergency Nursing, 16, 48–52.Google Scholar
Friese, S. (2012). Qualitative Data Analysis using Atlas.ti. London: SAGE publications.Google Scholar
Gerritsen, D. L. et al. (2007). Quality of life in dementia: do professional caregivers focus on the significant domains?. American Journal of Alzheimer's Disease & Other Dementias, 22, 176–183.Google Scholar
Gerritsen, D. L., Steverink, N., Frijters, D. H., Ooms, M. E. and Ribbe, M. W. (2010). Social well-being and its measurement in the nursing home, the SWON-scale. Journal of Clinical Nursing, 19, 1243–1251.Google Scholar
Gerritsen, D. L., Steverink, N., Ooms, M. E. and Ribbe, M. W. (2004). Finding a useful conceptual basis for enhancing the quality of life of nursing home residents. Quality of Life Research, 13, 611–624.CrossRefGoogle ScholarPubMed
Graneheim, U. H. and Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24, 105–112.CrossRefGoogle ScholarPubMed
Guse, L. W. and Masesar, M. A. (1999). Quality of life and successful aging in long-term care: perceptions of residents. Issues Mental Health Nursing, 20, 527–539.Google Scholar
Harris, P. B. and Keady, J. (2009). Selfhood in younger onset dementia: transitions and testimonies. Aging & Mental Health, 13, 437–444.Google Scholar
Hewitt, P., Watts, C., Hussey, J., Power, K. and Williams, T. (2013). Does a structured gardening programme improve well-being in young-onset dementia? A preliminary study. The British Journal of Occupational Therapy, 76, 355–361.Google Scholar
Kinney, J. M., Kinney, J. M., Kart, C. S. and Reddecliff, L. (2011). ‘That's me, the Goother’: evaluation of a program for individuals with early-onset dementia. Dementia (14713012), 10, 361–377.Google Scholar
Kitwood, T. (1997). Dementia Reconsidered, the Person Comes First. Maidenhead: Open University Press.Google Scholar
Lazarus, R. S. and Folkman, S. (1984). Stress, Appraisal and Coping. New York: Springer.Google Scholar
Millenaar, J. et al. (2016). Determinants of quality of life in young onset dementia – results from a European multicenter assessment. Aging & Mental Health, 21, 24–30.Google Scholar
Nolan, M. R., Davies, S., Brown, J., Keady, J. and Nolan, J. (2004). Beyond person-centred care: a new vision for gerontological nursing. Journal of Clinical Nursing, 13, 45–53.Google Scholar
Patton, M. Q. (1998). Qualitative Evaluation and Research Methods. London: Sage.Google Scholar
Phinney, A., Chaudhury, H. and O'Connor, D. L. (2007). Doing as much as I can do: the meaning of activity for people with dementia. Aging & Mental Health, 11, 384–393.Google Scholar
Richardson, A. et al. (2016). Psychosocial interventions for people with young onset dementia and their carers: a systematic review. International Psychogeriatrics, 1–14.Google Scholar
Roach, P. and Drummond, N. (2014). ‘It's nice to have something to do’: early-onset dementia and maintaining purposeful activity. Journal of Psychiatric and Mental Health Nursing, 21, 889–895.Google Scholar
Robertson, J., Evans, D. and Horsnell, T. (2013). Side by side: a workplace engagement program for people with younger onset dementia. Dementia (London), 12, 666–674.Google Scholar
Steeman, E., Steeman, E., de Casterle, B. D., Godderis, J. and Grypdonck, M. (2006). Living with early-stage dementia: a review of qualitative studies. Journal of Advanced Nursing, 54, 722–738.Google Scholar
van Vliet, D. et al. (2011). Caregivers’ perspectives on the pre-diagnostic period in early onset dementia: a long and winding road. International Psychogeriatrics, 23, 1393–1404.Google Scholar
van Vliet, D., de Vugt, M. E., Bakker, C., Koopmans, R. T. and Verhey, F. R. (2010). Impact of early onset dementia on caregivers: a review. International Journal of Geriatric Psychiatry, 25, 1091–1100.Google Scholar
Vernooij-Dassen, M., Leatherman, S. and Olde Rikkert, M. G. M. (2011). Quality of care in frail older people: the fragile balance between receiving and giving. BMJ, 342, d403.Google Scholar
World Medical Association (2013). World medical association declaration of helsinki: ethical principles for medical research involving human subjects. JAMA, 310, 2191.Google Scholar